Feeling Judged

my proof of disability

Yesterday I went to the Secretary of State’s office and picked up a handicapped parking placard. It’s incredible how difficult the process can be. Not in terms of complexity, just that both times I have had to get one of these I’ve had to endure lectures from doctors (and others) about not abusing it, only using when I really need it, that just having MS isn’t good enough reason, etc.

As if I would have any interest in parking in a handicapped spot when I’m healthy enough to walk.

Hell, when I can make the walk easily, or even passably, not parking in one of those spots is one of the most exciting parts of my day. Just try to get me to use that pass on days I don’t need it.

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On Suffering, Loss, and Being Okay

How I Know That Whatever You're Going Through, You'll Be Fine

suffering

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I’m developing a capacity for suffering, for losing people I love, and yet I know deep down that I will be okay. In fact, I know it because of the suffering and loss.

I know you’ll be okay too. I want to share with you how I’ve come to know this.

A Word About My Own Suffering

I was dx’d with multiple sclerosis 25 years ago, December 5, 1990.

I didn’t get on a DMD (disease modifying drug) until 1998. During that time I had one or two flareups. I got onto my first DMD in 98 and was on it for about four/five years. During that time I had one or two flareups as well, but might have had more if not for the medication. No way to know. I purchased and used a cane for the first time. I would go years without using it. I even considered throwing it away a few times, as its presence reminded me that one day I might need it.

I went off meds in 2003 when the DMD I was injecting caused cardiomyopathy. I was off all DMD’s for years because interferon, the active ingredient that had caused the heart damage, was in nearly all of them. During that entire time off medication, I had three or four flareups, but they were pretty bad. Off work. Unable to drive, type, read, etc. I couldn’t feel my hands, feet or face. [If you’re now thinking of the pop song (I can’t feel my face when I’m with you…”), I definitely did not “love it.”]

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Walking improving substantially

I would say I’m 60%, perhaps 70%, better now than I was the day I went into the hospital (and the number moves to about 85% if you are just rating my walking). Walking has improved pretty dramatically over the past 48 hours. I attribute this to some important work done in PT, combined with having spent an hour on the treadmill on each of the two days.

Today I got to 2.5 mph on the treadmill in PT and was able to do most of it without holding on to the rails. I was unable to walk heel to toe at PT, but tonight at home I was able to take several steps before losing balance. Best of all, I was able to balance on my left foot, the one most substantially weakened, for 30 seconds.

If you were a fly in the wall in my home, you would observe that I am not using my walker in the house anymore, and am much more self-sufficient. I make almost all of my own food, get my own medications, and am almost completely independent. I occasionally do a little bit of housework. I am using the cane exclusively at home, and to get out to my car. I use the walker only for longer distances, as I still tire very quickly. When that happens, I lose balance, coordination, and proprioception (the sense of  the relative position of parts of the body), which makes walking difficult.

I am really happy and encouraged with the rate at which I am healing and getting strength and function back. I occasionally have half a day that feels almost normal, or at least several hours in a row. Feeling is even beginning to return to my feet and legs, which I think accounts for a lot of the rapid improvement in my walking. The sensations in my feet and legs are still really uncomfortable,but I know they are signs that healing is under way, and I say bring it on.

Learning to Walk

Three brief videos are now on my YouTube channel that show how severely my walking had been affected immediately after I was hospitalized, and PT’s starting to teach me to walk again. Pretty amazing what they can teach, given that I couldn’t, and still can’t, feel my feet.

Preaching Sunday

A word to readers of my blog who are not connected to the church I lead, Wildwind Church, and who do not know me personally. I have felt it necessary to use this blog a great deal lately to keep loved ones and interested readers all over the country informed about the status of my struggle with MS. I have tried to write some good posts from lessons I am learning and valleys I am walking through in the process. I will be using the blog this way indefinitely, and I hope all of my readers continue to find content that teaches, challenges, and inspires them.

From Wildwind Church Facebook page:

I will be preaching Sunday. I will have a message of some kind prepared for church and will be there to deliver it (assuming no huge ripples between now and then). Whether you attend Wildwind Church, have considered attending, or don’t attend, I look forward to seeing people I love there this week and for us to simply be together. I have counted on, and continue to count on, this community of encouragement. I will be there to encourage you, as I have tried to keep doing through my current ordeal, and I know your presence and love will be a deep encouragement to me as well. — dave