On Suffering, Loss, and Being Okay
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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.”]
In 2012 I had a flareup that just wouldn’t remit, and I pretty much slept Halloween through Christmas. My doctor found a non-interferon drug he trusted and got me going on it in January. They take six months to start working and by Feb., that same flareup landed me in the hospital for nearly a week. Most of that week and the week before and a few weeks after, I walked only with a walker, and did some wheelchair time in the hospital.
Recovery from that flareup took almost eighteen months, though I’ve never recovered fully. I was well for four months, feeling amazing, walking without my cane. Then another flareup, and back to the hospital for infusions. Then two more times over the following eighteen months.
Flareup again this past fall, again back to the hospital for infusions. Sick all through Thanksgiving, then felt amazing (no cane even) from early December through yesterday.
New flareup started yesterday. Loss of feeling in legs again.
See the pattern? As this disease progresses there are more flareups, healing is less complete, meds are often less effective, flareups happen closer together, and disability builds upon disability.
My current doctor is retiring, so I am going to a new doctor who is going to evaluate me for a new DMD, hopefully an oral one so I can say goodbye to these shots.
How I Know I’ll Be Okay, and So Will You
My disease is definitely intruding much more into my life. Back when I was first diagnosed I would go months at a time without even being conscious of the disease. Now I never go even one day where I don’t think about it.
Yet I don’t feel fearful. I am not looking forward to what may come, but I really don’t fear suffering or death. My experience has been that, at every turn, I have what it takes (which I call Christ or God) to weather whatever comes next and, stunningly, to actually find peace and happiness somehow.
I know this comes from God because of the Apostle Paul’s words about finding peace that surpasses understanding, and that is the peace I have most of the time. I have it, but I do not understand it, and I know it comes not from me but from something beyond me. Yet it did not happen overnight but has taken decades to learn how to receive, and I’m still learning, and the learning comes directly through the suffering and loss. I have suffered and lost so far, and been okay. So I know I’ll still be okay in the face of further suffering and loss, of whatever kind. I even know that you, too, dear friend, will be okay in your sufferings, whether you know it or not.
I do not say, “Bring it on,” like I used to. Those were the words of a cocky, angry, deeply fearful young man, trying in vain to summon courage by tempting the fates. Instead I say, “All shall be well.” And I know it is true.