Well, well well… I’m back with another installment of this little blog I’ve started up. It’s been a while since I’ve posted so a lot’s been going on. Some good, some great, some not real good. My hair and makeup assistant couldn’t make it in this morning so no video blog today, so typing on my slick Mac it is.
Here’s the non-bs answer on “how my doin”… well, sneaky depression has reared its ugly head and has tried to weave itself around and within me as it likes to do when my guard is down. I have been fighting my best to brush it off. Most times that works. I try to be strong and power through, use all my resources and professional help. Hell, I’m a self-professed warrior, for crying out loud. I strive to share and to shine hope with grace. But here’s a real trick, taking my own advice and counsel. I can’t always ignore the realities of my life. I have to allow myself the right and the strength to take what comes at me, process and feel it. I give myself permission to wheel myself into my bedroom and let out the raw emotion. It needs to be done at times to cleanse my soul. I write this blog for many reasons but one big one is to help me openly express myself and allow myself to be vulnerable. To accept help from others and to maintain my core strength and ability to help others.
I’ll open up a bit and share what it is I’ve been struggling with. The one thing I do know to be a fact. These feelings I may be having now… “These too shall pass.” I say it over and over and I believe this wholeheartedly, but I also add “hurry the fuck up already!”
Being someone who had never really been sick in my life, no surgeries, no broken bones. I was always a fairly healthy guy, not withstanding my later years “Dad bod.” Anyway, the point is, I had no sense in what it would be like to be disabled in any way. Things I took for granted day-to-day all of a sudden were becoming compromised. Once finding out that what I was dealing with was progressive and untreatable, my biggest fear was my continuing loss of my independence. THAT… that is at the core of what tries creep back into me. I try to will it all away, laugh at it… stare it down. A year ago when I lost the use of my second leg and was confined to a wheelchair, that was hard. No BS, it crushed my independence, my freedom, my ego and so much more. The last time I was able to drive a car, or walk the halls of Apple (the greatest company in the world! IMHO). I regressed, turned within myself and dealt with anger, denial and disbelief. But I kept it in. Friends and family were there offering help, I didn’t want to see anyone. I hoped though that acceptance could be around the corner if I’d just embrace it, change my thinking. That became true, and this is how I will feel again. Maybe just after I publish this post even.
The need to pick myself back up when I fall must be practiced and I must be on guard and on the lookout for the fears of life that will try to take me down. This is what has me off-balance now, had me take my eye off the ball of acceptance and the “never give up” mantra I believe so much in. For you, It could be something different, something personal, big or small. Doesn’t matter because it affects YOU!
I started to feel weakness in my left arm last year, the progression had been kinda gradual, Neurologists felt that I was a fairly “slow progresser.” Very good news for an ALS patient. I still had a good deal of independence. I could use my arms and upper body strength to do most things. I was getting around town in my speedy power chair very well. Using both hands to raise a glass, give a hug, a high-five or just grab the TV controls from my daughter sitting next to me. Well, sadly I have just recently lost full control of my left arm. It was going, but now I have to accept this next level of independence is gone for good. My right arm is holding on at about 70%. While my mind is sharp as ever (not saying much) my body won’t comply. So along with other issues, a big one now becomes my Home Health Care. How do I care for myself when it comes to physical tasks and most chores. I can’t. I’m a proud man, a strong man, a father teaching by example. Relying on a caregiver is what I now need to accept. While it’s hard for me, I do always try my best to live each day with a smile on my face. But new reality is the job of being my caregiver is a hard and unforgiving one. While I have endless love for my caregiver, the mother of my kids, who’s given up so much. I see the pain in her eyes when she see’s me suffer just a little more each day. Having to lift and transfer 180LBs of dead weight from my chair to my bed for example. Many, many strenuous tasks. Because I know everything going on within me, my feelings, emotions, sympathy and compassion… all still intact. I feel the burden I’ve become to my family. There’s is an unforgiving job, and it’s done out of love and with no income. We all have our limits and breaking points. This… this is what I’ve been battling with these past two weeks. How to provide them with respite and relief? The burden is physical, financial, emotional. It’s normal. It should be expected. I fear this could create undeniable stress to my family. That’s the evil talking, and dosen’t seem to care I am disadvantaged, from a condition which is akin to a life ‘locked inside a body that won’t move.”
Ok…. deep breath… that’s it for my public rant.
The rest of it is very personal and I’m still processing it with the help of my care team. One of which just informed me of the realization that what I am feeling is anger, even rage. Not a freakin pity party or poor me kinda thing. This is good news. Because once the fire of anger or rage inside of me burns out. It will be gone. I feel it already.
This was more than I intended to share. It’s all extremely personal. But the fingers on my good hand couldn’t stop relaying what was on my mind. I owe it to those reading here to see I am no super human.
“If you prick us, do we not bleed? if you tickle us, do we not laugh? if you poison us, do we not die? and if you wrong us, shall we not revenge?” That’s Billy Shakespeare by the way, and yes I just impressed myself! Ha… see I’m on the rebound.
One from which I will rise stronger.
For there is no doubt to that.