Читать книгу Directions - Randy Beal - Страница 6

Dang!

I find myself wanting to use much stronger language, but I'll tone it down here. My mind is racing ahead much faster than my physical body, as usual. As I'm working on this chapter, even the simple task of locating a file and sending an email is a major undertaking. By the end of a typical day, my left hand curls up into a rigid claw, and I have to use the right hand to straighten out each finger.

Since writing unDIAGNOSED, my physical condition has continued to deteriorate, though the rate of deterioration has slowed down. There was a time when I feared the numbness that was slowly creeping up my limbs would hit my heart and make it stop. Thankfully, the numbness stopped at my waist. But the challenges keep on coming.

By the end of unDIAGNOSED, I had purchased a power wheelchair, which I used at my wedding. I still use the same chair to this day, especially when going out. When I'm at home, I use my manual chair, but over the years it has become increasingly difficult to maneuver. My hands often slip off the wheels, but the biggest issue is weakness. My body doesn't want to cooperate with the signals my brain is sending. My left arm in particular becomes stiff and heavy, as if it's in a cast. Even the simplest tasks become compromised as my ability to grasp items slips away. I notice this most when I try to open the fridge to get my MS meds. I grab the door handle but the pressure from the fridge's vacuum seal resists me. I pull but my muscles don't respond. On the worst days, I have to call Emily to help me open the fridge.

In unDIAGNOSED I was hell-bent on walking again. There were times when I could wiggle my toes, or lift my leg while seated on the couch. These were big victories. Today I don't even try to wiggle my toes. Lifting my legs requires me to place both hands under my knee and to pull back hard. This would have crushed the old me. The new (and I'd like to think improved) me just wants to be there for my family, just wants to be the best I can be.

I tire easily and have to lie down during the day. I used to be able to get myself into and out of the bed on my own. On one such occasion I slipped and fell while transferring. Emily was at work. It was just me on the floor and the cat hiding somewhere in the other room. I knew she wouldn't be any help. So I called the fire department. Emily had made me program their number into my phone in case something happened while she was away. As usual, she knows best.

I can't tell you how humiliating this experience was. The firemen were great, very helpful and kind.

"Anything hurt?" they asked.

"Yes, my pride," I said.

I laughed it off, but it really bothered me on the inside. Firemen help the little old ladies who get their cats stuck in trees, not guys my age It really stung that I had to be helped, that I had to pick up the phone to ask for help, that I had to be helped by guys who were my age or younger than me. I felt like I had become the "I've fallen and I can't get up" lady.

This happened numerous times over the years, and I'm so over myself now. You fall down; you get up. And sometimes you need help. It's as simple as that.

I don't try to do the transfer myself any more. I'm grateful for the firemen who always helped with such grace and compassion and for my wife and father-in-law, who never complain about helping me into or out of the bed.

Heat is my nemesis. I keep my apartment air cranked at a cool 55 Thankfully, this seems to suit the whole family, so we don't war over the thermostat. When exposed to heat I get worn out very quickly. My vision blurs up, weakness takes over, and my speech slows to a snail's pace. Speaking isn't the easiest thing to begin with for me anyway. I have difficulty controlling my breathing so words come out slurred. At its worst, I literally choke on my own words. Speaking a lot causes my throat to constrict and close up which leads to aspirated breathing and coughing.

A few times I landed myself in the ER as evidenced in this blog from 2012:

Though it was not that drastic, I still found myself in the ER last night. This was the second time this month. I had some bladder issues I had to go in for. I have made an appointment with my urologist (a.k.a. pee doctor). I will be talking with him about prostate issues. I have prided myself on being open about things I’m dealing with in life. So here’s another.

In the good ol' days, I used to be able to cath myself intermittently when I had to pee. This worked just fine for me over the years. As time progressed, I more frequently needed help from Emily to get cathed. And the worst case scenario was when neither of us could "tap the keg" so to speak and had to take a trip to the ER to get 'er done.

During those stays, they would always install a Foley catheter and that would give me relief for the moment and freedom from having to cath myself for a full month. When Emily became pregnant, we decided it would be better for me to go with a Foley catheter full time. Just another example of how I go with the flow.

So other than gradually losing more and more motor control, not being able to open the fridge, total loss of mobility, multiple falling episodes requiring emergency rescue, being felled by heat, declining speech quality, and having to pee into a bag, things are just fine.

No seriously, folks. I've been told I have a tendency to downplay my limitations, so I've spelled them out here. They are very real, ever-present, often quite discouraging. But they are just hurdles, obstacles in a race, opposing tackles to be danced around in my quest for the goal. I try to not let them get to me, but at the same time they remind me of the important things.

Like living.

Nothing makes you appreciate life more than almost losing it. Not too long ago I was minding my own business in my office, working on some emails while going to town on some ham. I popped a bigger chunk into my mouth, thinking it was probably too big but also thinking, "Screw it; it's just a piece of ham." Sure enough it was too big and I started to choke. The ham was cutting off my airflow and my ability to cry out for help. I must have made some gurgling sounds, though, because Emily came in to check on me just then and saw me struggling.

I managed to signal I was choking and needed Heimlich. "Ham . . . stuck . . . throat," I gasped.

She sprung into action and administered the infamous maneuver. Either that or she was just using this as an excuse to pommel my back and stomach with punches. None of it seemed to work.

"Do you want me to call 911?" she cried out.

While I considered and continued to choke, the ham dislodged and I was able to breathe again. It took me quite a while after that to regain my composure. I was scared for my life. While it was happening I thought, "Holy Crap! Am I going to die? Choking on ham?" I was freaking out.

Thank God Emily came in when she did. Once I had calmed down and we could talk about it, Emily reminded me not to take such big bites. I knew better. Of course I did. But I also get so tired of being so restricted all the time that sometimes I literally bite off more than I can chew. I have to give myself pep talks and reminders to keep on taking baby steps and not to lose my focus.

There have been many times over the years that I have been relaxed on things I know I needed to or not do to make sure I felt good and was up for the task of tackling the day. I could go on and on about everything this entails, but there is no need for all that. I was working out today and it was tough. I had not been working out like I knew I should. I know as a normal healthy adult there are excuses to not do things you know you should do and I always had one. As an adult dealing with an illness, I need to be vigilant with all my to do’s to be able to face each day to the best.

Apart from picking up my own spirits and lifting myself up, I have a great support network, the first and foremost being my wife Emily. She saved my life that night and she continues to save me, consistently, each day. Sometimes I wonder what she sees in me, why she stays with me. But mostly I'm just grateful she is mine. My blog from our third anniversary says it best:

Three years ago today I made an awesome decision. I married the best, most beautiful girl. Like many guys I wanted to just go to the courthouse and get married there. We ended up doing the opposite of that and got married in front of friends and family and then had an amazing reception. I will never forget that night and am glad we did that. Emily, I am so thankful to have married you. You are an amazing partner! Even when I disagree with you and we argue, I would rather argue with you than anyone else. You are definitely good at that. So, I want to stay thank you for marrying me. I’m so happy I can call you my wife!