May is ALS awareness month, so it came as no surprise to see an episode of the Night Shift where a man was diagnosed with it. It made me think of when I was diagnosed.
I had several uncharacteristic falls prior to my diagnosis. I fell on the job, but I was actually walking backwards and stepped on my friend’s foot. So I explained that one away and laughed it off with everyone else. I later fell twice in my son’s room; once after stepping on a small toy;and the other was more of a slide from the edge of his bed because my feet were tangled in his comforter and the hardwood floors did the rest. I sprained my knee that time, and wore a brace for a few months because it would give out occasionally. In hindsight, these were the first signs of my legs becoming weaker, but since I could explain each fall, I thought nothing of it. And because I couldn’t ride my bike, my weight, blood pressure and other things ballooned out of control.
I began looking into gastric bypass surgery. I had been approved by my insurance and had completed all the requisite clearances and had a date for surgery, December 16th, 2010. Three weeks prior, was a family vacation to Disney World, and I drove there and back. And anyone who has taken children there that it’s miles and miles of walking! My legs were so worn-out that I was literally using Laila’s stroller as a walker by the end of each day. Of course, I attributed this to my weight-gain and inability to exercise the last few months. On the night we arrived home, I slipped on a slick spot and grotesquely broke my left ankle, requiring a plate and six screws. Little did I know that I wouldn’t walk again without assistive devices.
The symptoms of ALS are often accelerated after traumas such as car accidents, surgery, etc. So when I began to lose the ability to raise my arms while recuperating from my ankle, I feared that I had damaged something else when I fell. Then I remembered a few things, like being unable to play fast runs on the organ several times over the past year or so, and the mild numbness in my fingertips, or the fact that during the FL trip I had people open my bottled water because I couldn’t get a grip. I was scheduled to see my primary physician about that the week after vacation. So after multiple consultations, and months of therapy and devices to help extend the use of my hands, I received the diagnosis.
Over the next 18 months I lost the ability to feed, toilet, bathe, or care for myself in any way. It should have been scary but it wasn’t. It was frustrating and in some cases embarrassing, but never scary, except for when I had to deal with steps. Every time I had to navigate stairs I could see myself falling. But that was it. When my speech became more and more slurred and eating and drinking became more and more difficult, I was saddened. I had been gradually losing everything that made me human. I had begun to use the CPAP machine 24hours a day instead for sleeping only, life was looking bleak. By December 2012, I was facing surgery that would leave me dependent on a machine to live, or death by suffocation and/or starvation.
Obviously, I chose surgery, but it wasn’t just for the extended life-expectancy. The fact is that from the day doctors suspected ALS in February 2011, through my official diagnosis that June, through every single physical loss to date,I have been believing that God’s going to heal me! And as I look back on the journey of the last five years, especially the last two years where I’ve battled a wide variety of fears, isolation, rejection, loneliness and even hopelessness, God has continually delivered me into His grace;a place of faith and strength! Where I am reminded that His power is greater than the challenges that I face, and His grace is sufficient while I wait for His healing!
When you find yourself in a valley, there’s no telling how He’s going to provide deliverance. But whether He leads you through the valley, or removes the mountains from around you; if you stay in Him and not allow what you see or feel to affect your faith, your circumstances can not conquer you!
I am thankful that on most occasions I am able to glean the positive out of a given day’s challenges. But on days like this it’s really tough. I wake-up and I see a beautiful day outside, the sun shining brightly. I wake-up approximately every two hours for suctioning, and earlier I remember Laila showing me her pretty, spring dress, at her mother’s behest. But now I realize that I have no idea where anyone in my family is! Obviously they are enjoying this beautiful Saturday. And a quick glance at the nursing schedule gives me the clue that apparently, I will have extended nursing hours. From 11am until 9am, I will have a nurse. Past experience suggests that this means the kids will be gone all day and my wife will be gone most of the night. Often it’s discussed ahead of time but not always. My first clue is often the already worked out, modified schedule that comes via e-mail on Friday afternoon. It’s actually a common occurrence, that I am basically left alone with a nurse while everyone else enjoys a weekend of fun and adventure. Countless photos of my children in places that I had no idea that they were going appear on my facebook timeline. And while I am glad that their experiences aren’t very limited by my condition, when you combine this with my wife’s nightlife it’s difficult not to feel piled upon. I feel guilty for this, but it’s really hard to not feel like a pet fish when everyone is living life “around” you! I can only comfort myself with pictures of the rare moments of family togetherness for so long. Nineteen to twenty hours of my day are spent alone.
Is it wrong to wonder what it would be like to feel loved on a daily basis? I am not suggesting that they don’t love me, but love, being an action word, should be felt. I go weeks without anyone sitting within an arm’s-length of me. I have visitors about two or three times a month, and they stand at my side, with a hand on my arm and talk to me. And for someone that’s a sensory-deprived, paralyzed, socially isolated person that’s huge! The love conveyed through touch can not be overestimated. I am so alone! I want to feel wanted! I want to feel prioritized! I don’t want to feel like the only time I am important is on my birthday or during medical crises! I am tired of having to post images of past acts of love and seeing all the “likes” and comments knowing that my day-to-day experience isn’t even close to that! And I can’t even get out of the house if I wanted, despite the fact that I have come up with a solution to being bedridden almost a month ago. Since it’s not much of a priority for the people in position to act on my rather simple plan to liberate me from this room, I have to wait patiently for it to be done. It could have been done in a week or less, but only if it’s deemed as important.
Instead, I lay here with the only options available is whether to watch television, read or write. And despite communicating my need for physical contact, for knowing where my family is, for simply not spending my life with nurses while everyone else is enjoying life; this seems to be what I have to look forward to. I mean, what are my choices? There are certainly worse situations that I could be in, many people with ALS have no one. It’s just that I had hoped for more as I looked at the future progression of my diagnosis.
God has been my every day companion, He’s seen my tears and heard my cries. I don’t know what my future holds, as is the case with us all. I don’t know if I would choose a better situation even if it presents itself. It may be God’s will that I suffer in this manner.
I know that this is a selfish post but I seem to be the only person who places my day-to-day well-being as a priority.
Many of you aren’t aware of this, but I was married before. I got married a year after I graduated high school and I was totally unprepared for the challenges it presented. My mother suggested it at the time but I was too grown to listen, so by the time everything was said and done the marriage yielded a stepdaughter and a son, and two damaged parents. I have never admitted it outwardly but as I got older, and better versed in the Godly role of a husband, I placed the blame for that failure squarely on my shoulders. I am who God expected to lead.
Fifteen years later, I married Jennifer. And while I had the benefit of greater maturity, marriage still wasn’t a piece of cake. I had to learn many things, some of which were a remedial course of sorts. But because of a closer walk with Him,I was a far better husband and father this time around, though far from perfect. One mistake that I seemed to repeat, though for entirely different reasons, was a failure to build a proper relationship with my stepchildren. In my first marriage it had more to do with the brevity of the relationship. This time it was multiple factors but I bear the blame in each instance. I am the adult and the responsible one. And many years of them having the loving father that they deserve, that I in fact had,were lost. They both love me, as I do them. But things still aren’t as they should be.
I was able to be there for my oldest son for the last eleven or so years but I missed out on a large chunk of his first twelve or so years, and it’s evident in our current relationship. Now he loves me dearly. But he’s been trapped in the middle of my first family and my current one. And having walked that fine line for so long, he’s settled more with his family than with mine. Which severely limits our time together. This again, is my fault because he learned the art of inconsistency from his dear old dad.
So as I lay here lamenting the plethora of poor decisions that I’ve made, not the least of which is not trying harder to foster a fundamental understanding between my wife and my ex-wife, (which may have been impossible), I have two fractured families and a ton of regrets that I can do nothing other than pray for. As the great humanitarian Rodney King once said…
When I started this blog, the intent was to have a place to write out my heart. Well that’s proven to be a difficult task, for various reasons. What I’ve decided to do is to keep my blog separate from facebook, and rather than solicit readership, I’ll let you decide to visit or not. Not that this story will be any different from my facebook version, but it will be as my “about” page indicates, unfiltered and human.
Isolation is a huge component of my journey. And it comes in various stages. I mean, I know that people love and are praying for me, but very few people have the inclination to have regular or in-depth contact with me. For example, think back to Monday of this week. Beginning with when you first open your eyes from sleep. How many people did you speak to, or kiss before leaving your own house? Then factor in texts and phone calls. Upon arrival to work, or to drop off the kids; you greet everyone with a “Good morning!”, Some people even rate a hug or handshake. Then your workday or school-day involves whatever inherent communication, and finally that’s over. Then you leave, and what? Go home, get the kids, consider dinner? Connect with spouses, go to the gym or classes, church or bowling? Finally it’s time for bed, and you get into bed with whomever you share it with, or alone; but not before talking your girl or your significant other. All in all, it was a normal and typical day. Everyone has rushed, packed to the minute days, especially if you have children; and by the end of it you’re spent. But hey, it’s your life, right? Whatcha gonna do?
For the sake of comparison we’ll assume that my wacky sleep patterns have me waking at seven-ish. I awake to whoever worked overnight and request suctioning. Sometime in the next hour Jennifer will come downstairs and pass me en route to the bathroom and say good morning, often touching me as she passes (the bathroom is connected to my room and you have to enter and walk past me to get to it ). While she’s in there one or both of the kids enter my room to ask something of their mother through the closed bathroom door. Most times they’ll say good morning if they notice that I am awake, which is a 50/50 proposition in itself. When she exits the bathroom, she gathers the kids and their breakfast, has them come say good-bye, and they head out to school. At nine, there is a nursing shift-change. This nurse will stay until four. In that time, my wife may be working, sleeping or any number of things; largely predicated on whether she went dancing the night before and what time she came in. So, from nine last night until four this afternoon, with the exception of the occasional bathroom break, I am alone with a nurse. The only interaction with them is care related for the most part. I have a friend that I text a few times almost every day, but that’s it. When the nurse leaves at four, I am either alone in my room with my wife listening for my alarm so she can render care, or she sits in here using her iPhone or computer. This is usually predicated on whether I am watching something that she finds interesting. Then at nine, the overnight nurse comes in.
Every day is a close variation of this. A family movie gets me more time with the kids similar to how an interesting show gets me more time with my wife. But overall, the nineteen hours of nursing are spent with just the nurses. Other variations are Tuesday, which is bath day. And on weekends the agency occasionally provides 24-hour coverage for one or more days. This allows for all-day or overnight excursions for Jennifer and/or the kids.
So this social isolation is a real issue for me. Let me be clear about this. I am NOT throwing off on my wife or anyone else. Everyone has their burdens to deal with and I am simply sharing mine.. Over the last year or so, we have tried to address it several ways but invariably, this seems to be the default pattern that we always revert back to. And I have to admit, some days it makes me extremely angry! Those are usually the days when I post on facebook. I find that writing allows me to visualize the situation outside of my own mind, making it a little easier to deal with. More importantly, it allows me just enough distance for God to move on my heart and be ministered to. Apparently you can, indeed get in the way of your own deliverance!
So take it from me, even though your anger and frustrations may be justifiable, holding onto them is rarely beneficial! God will help you put them in perspective if you bring them to Him! And even if He doesn’t deem fit to resolve the situation, He will give the the strength and grace to withstand it; at least for today! Lest you decide that you no longer need Him! Lol! Peace and Love Fam!
This isn’t the day I had planned. Today, December 21st, I was supposed to be travelling to Maryland to enjoy a Christmas production featuring Commissioned, the Winans and Tamela Mann. Earlier in the week there were nursing issues threatening the trip, and frankly, I wasn’t bothered by the idea of canceling at that point. For some reason I had not built-up any excitement about it so the idea of not going didn’t bother me. But then, the nursing problem was resolved and all the pieces fell into place. Additionally, there was a strong possibility of meeting Fred Hammond through a close family friend, which would’ve been great! Now, I’m excited! Jennifer, along with Pamela Learned and Danielle Lewis had managed to plan a weekend that would include not only the previously mentioned event, but attending my church and Longwood Gardens for their Christmas display! I was genuinely hyped…and it all fell apart!
A malfunction with my wheelchair derailed EVERYTHING at the last minute! I was crushed. This is where the assault begins. The enemy combined with my humanistic mind conducted a multi-fronted attack to depress me. They used weapons such as:
– This is just one more preventable event that you have to suffer through alone while everyone around you happily enjoys life.
– I’m lying in the same spot I was yesterday, and the day before that; and tomorrow, the day after that…
– Serves me right for looking forward to anything.
– There were other possible options but you weren’t given the opportunity to explore them.
– Few people REALLY understand or care what you’re feeling, they visit your world, leave a kind word or two, and they’re gone.
– Once again, your holiday will be just like any other unremarkable day.
– To add further insult, now your daytime nurse is sleeping.
Then came this thought…where were you one year ago today? Well, that’s easy. I was laying on a stretcher waiting to have my tracheotomy and feeding tube surgeries done. It was cold, crowded and uncomfortable in the holding area. It was similar to boarding an airplane, being seated, then being informed of an hour or so delay for weather. Jennifer and I sat for what felt like hours, watching the clock and other patients being wheeled into their procedures. While waiting I had Jennifer make phone calls to my oldest brother, Dwayne Bowens (it’s his birthday) and to my old job (CYR) where we spoke to homie Charron and my other mother, Mrs. Coleman. Afterwards, I was ready. Jennifer kissed my forehead, assuring me she’d be there when I came out. I was wheeled in, transferred to the table, introduced to the surgical personnel and asked to count backwards from 10, 9, 8…
Light peeking through half-closed eyelids, then suddenly awake! I can’t breathe! My nose isn’t working! I’m trying to tell Jennifer, the nurse, ANYONE I cannot breathe! They’re telling me to relax, telling Jennifer I’m okay. OKAY? #@!*!! I’m trying my best to scream…nothing. Suddenly exhausted and resigned to die, I stopped trying to breathe, and the breath came (that’s another sermon for another day).
This was the beginning of a new life for me. I’d spent 15 years on the other side of this. So many years of Linda Vitale carrying that dreaded admissions notice; the trache patients meant lots of extra work added to an already overstuffed workload. Now I WAS that extra. But flash forward 365-days and I’m doing wonderful! I’ve exceeded my expectations manifold! I was literally waiting to die! But God said LIVE!
I have learned to trust what He says over what I see, hear or feel. So concert, Fred Hammond, Longwood Gardens, Covenant Fellowship…I’ll catch on another day. But I choose to rejoice on THIS day rather than lamenting and resenting! And I look forward to Christmas even though it’s not really the day Christ was born, and it was previously a pagan holiday celebrating winter solstice; it’s the day set aside to recognize His arrival. Without which there would be no eternal hope! So as you give, receive and love, don’t forget to acknowledge He, whom we celebrate! Love ya Fam!
In 1995 I became a Licensed Practical Nurse (LPN), and since then I’ve spent all but one year of my nursing career working in nursing homes. In terms of what one can experience in that setting, I had a wide-ranging experience there. I was a charge nurse on the skilled-nursing unit primarily, but I worked all over as needed. I frequently served as team leader, treatment nurse and even house supervisor in an extreme circumstance. I recall several co-workers commenting that they wouldn’t do what I’m doing without an increase in pay. The fact is, the experience was more valuable to me than a few dollars. You see, the funny thing about organizational hierarchy, and this is especially true in nursing; it’s frequently perceived that the person one step above you isn’t really doing much! LOL! I really enjoyed the increased responsibility and embraced the challenges they presented. Additionally, I was proud of the trust that administration had in me! I eventually made it to department head of a program which I helped to develop, the Restorative Nursing Program.
The best part about these experiences was serving the residents (patients) in a much more in-depth way. In addition to their medical needs, I was able to positively impact their psychological, psychosocial, nutritional, recreational and functional mobility areas. I even assisted in educating family members concerning their loved ones; helping with conflict-resolution, decision-making, and providing a sense of clarity. It wasn’t the easiest avenue in my field but I loved it!
Now I’m on the receiving end of the nursing process in the most extreme way! Having cared for many residents like me, complete/total care, the change in perspective has been drastic! As a nurse, I relate to my experience on various levels. The following are some of the revelations from my perspective turnabout:
1) If you’re unable to or have difficulty communicating, people often expect more patience with their attempts to interpret you than they have available for your attempts at communicating.
This is a tricky issue and tough for both sides. I can recall many instances when a resident became upset because I had difficulty understanding what they were saying. I tried various methods to make it easier by allowing them to write, allowing them time, even obtaining help from people known to have success with interpreting that particular resident. What I’ve found is most people don’t have much patience in that regard. Though it’s understandable to a degree when in a hospital setting, where you have multiple patients with pressing needs, but I’ve had nurses come in, turn my call-light off and leave without even attempting to discern what I needed. In the home setting where you mix in untrained family members, fatigue from full work-days, children, other family dynamics, their own physical and/or medical needs; things can become challenging for everyone
Over time, you simply stop expecting EVERY need to be met. I adjusted my expectations to deal with certain issues like minor itching and discomfort. Now you’re not having nurses avoid your gaze as they pass your room, and reduces the strain on the family and friends that partner in my care.
2) Regardless of the time of year, urine gets cold extremely fast, especially when you’re laying in it.
I am very fortunate this regard in that it’s only happened on a handful of occasions in the three years I’ve been sick. Of that handful, only once was a case of the “I can’t hold its”. The others were nursing gaffes during which I was either deprived oxygen long enough to induce a sort of pre-fainting release or unattentive urinal handling (smh). I can recall beginning shifts with CNAs reporting that they were finding residents surrounded by rings of urine, (for the uninitiated, that’s usually indicative of length of time and/or how many times they urinated since being changed).
I have a new understanding of the utter degradation and humiliation of what that feels like! If it were a regular and routine occurrence I don’t know what would be worse, the constant degradation or the eventual acceptance and resignation to it.
3) For those of us who can communicate; when folk ask you how you’re doing, 75% wanted a brief positive answer like “Doing well!” or “Blessed by the Best!”. Another 20% can tolerate a brief negative response like “Not too good today.” or “I’ve been better.”. Very few people really want details either way.
I have to offer this caveat, 95% of my communication is done online and most people don’t have time for long conversations during their drive-bys on Facebook and other social media. But I noted this long before I became ill. People generally don’t want to be bogged down with the gravity of one’s day. Especially dealing with their own stuff, or perhaps trying to sustain their day of positivity. Either way I got it! The world doesn’t revolve around me and my issues; only MY world does! That’s partially why I started a blog, for those few who want details! I reserve FB and the like for generalities and prayer solicitation.
4) Focusing on others keeps me from dwelling on myself.
I remember the day quite clearly. February 14, 2011, around 1:00pm the telephone call came through informing me of the possibility of a diagnosis of ALS. I sat still for about an hour or two. Then, I reluctantly researched and familiarized myself with what ALS entails. From then until now, there’s been few surprises. Occasionally, looking at my situation can get me down but I’ve found that focusing on others is key to overcoming that. When I see people expressing hard times, I say a prayer, send a message or both. I’m always cognizant of the fact that things could always be worse. A few years ago, I don’t know if I would’ve believed that it would be possible to be here, and not be chronically depressed. My Lord has certainly kept me!
5) There is power and comfort in the human touch of love.
As different aspects of ALS have overtaken my body, one thing has remained steady. The touch of those who truly love really makes any day better! The absence of loving touch, especially for someone who’s paralyzed, can be a brutal, dehumanizing blow! Consider how often you rub your hands together in a day, scratch your head or rub your nose. Now think of no touch, save what’s medically necessary. It would be horrible. When I was in the hospital, I had family that would simply hold my hand, or rub my feet for their entire visit! The warmth and comfort it provided was immeasurable!
Ultimately, there’s one lesson that supercedes all others. God’s power and presence is the prevailing reason that I thrive. Whether through scripture, song or prayer; He’s the source of my joy! Jesus is definitely the reason that I can still smile through this, my season!
Since I was a child I’ve always had a strong imagination. For this reason, playing alone was never a problem for me. Up until the age of 10-ish, television provided the backdrop for my imaginary adventures. One day I was partners with Steve Austin (Six-Million Dollar Man), and the next I’d be teaming with Jill, Sabrina and Kelly (Charlie’s Angels); always battling the bad guys. I even investigated mysteries with Scooby, Shaggy and the gang! There was never a shortage of characters for my alone time. When all else fails I always had wrestlers to do battle with!
In my teen years, my musical aspirations took over. I sat at home studying drummers. Since there was no internet, I studied the one’s I saw. Vernon Johnson was my favorite (years later we became tight brothers), but there was also Jerry MacBeth, Walt Lewis and even John Lewis III (young rivalry at church)! I would play along with cassettes that I recorded of services; on my lap and in the air. I virtually pretended to be them, mimicking each move for days on end. Eventually I started playing bass guitar and played along with Walter Hawkins, Keith Pringle and my favorite bassist, Fred Hammond of Commissioned! I even followed behind my brother Peter and played the tuba for several years. I finally found my passion with keyboards and that’s where I stayed. As a keyboardist/organist, I studied Randy Oliver, Thurston Cox, Willis Hickerson, Steven Ford, Zak Williams and Bryant Pugh. From mannerisms to technique, I spent time emulating each one. It was my method of learning. Essentially, I mimicked and copied people I admired until finding my own niche.
Flashing forward to now, in my present, temporary condition; my mind is probably overactive. Consider this. In the course of a normal day most people go through a series of interactions with greetings, chitchat and goodbyes. Some of these are interspersed with other necessary communications regarding work, school, children/family concerns and personal relations. In each instance there is a thought (Hey, there’s so-and-so), a physical action (What’s good Man?), a consideration of their response and physical response to that (Yeah, I’ve been wanting to talk to you about that) and a resolution (Alright, talk to you later). Often as a result of these various communications conflicts, misunderstandings and hurt feelings are initiated, confirmed or resolved. Sometimes love is established, other times hate is fueled. The same can be said of faith, confidence, security and any other facet of our emotional states. They all begin within and manifest in our actions or inaction. Inevitably, my mind is periodically overrun with conflicting emotions and regret.
I have found various ways to address this. Prayer has helped but it’s not always an answer unto itself (more on that later). This may be surprising but Facebook has been extremely useful! Due to its gross popularity, I’m able to connect with people from almost every juncture of my life. Taking my time, I’ve been able to apologize for wrongdoings and achieve reconciliation. Where reconciling isn’t an option (it takes two to tango), I’ve at least been able to free my spirit from guilt by apologizing. I’ve also been able to let various people know how special they were to me. All this time in my mind I’ve been able to identify people who’ve been in or through my life that’s made positive impact. Perhaps they didn’t know, didn’t care…or maybe they were at a point where they thought nobody cared! Either way I reached out to them; some were happy, some lukewarm, some unresponsive but it was edifying regardless.
However, the most significant battle in my mind is waged against my faith. The enemy (Satan) and my humanistic mind (logic) send their Black-ops and Seal Team Six in, armed with such firery darts as: “You see that you’re STILL in this bed, you ain’t healed!”, “Have you seen ANYONE get up from ALS? Cancer, brain tumors, diabetes…yes; but not this!”, “You’re only deluding yourself, coping mechanism against the inevitable!” and “Everyone dies and this is how you’re going out so just accept it!”. Meanwhile my spiritual response begins in my spiritual head, enclosed in the helmet of Salvation it signals my left hand, which intercepts those darts with the shield of Faith. Then it goes on the offensive by signaling my right hand which has the sword of the Word, delivering blows like: “By His stripes I am healed!”, “All power is given unto Me in heaven and earth!”, “Behold, I am the Lord, God of all (even diseased) flesh; is there anything too hard for Me?” and “These things and more will you do in My name!”. My heart, secured behind the breastplate of righteousness, now emboldened and strengthened grows with each small individual battle won. They’re brought back to remembrance in times of weakness and tough battles. Finally, as my feet, shod in the preparation of Peace remain pressing forward, they leave a peace that surpasses all understanding wherever they tread. It’s a daily battle but with a predetermined outcome!
So what am I trying to convey through all of this? Simple. While you are yet able, consider those you may have offended in the past, and apologize. Do this even if you don’t agree with their reasons, for it doesn’t lessen their pain; and have no expectations for a positive response. Your apology frees you up regardless of the response. Next, forgive anyone who has offended you. Where it’s feasible, let them know they’re forgiven; they may receive freedom also. Finally, put on the whole armore of God that you may withstand the attacks of not only the enemy but yourself! Love ya Fam!