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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Your Gift of Darkness: What To Do With Your Suffering

My post idea today comes from a reader, who emailed a heartbreaking note to me. She attached the quote at the top of this post, and wrote:

I came across this quote not too long ago and it stopped me in my tracks. As a teenager I was sexually abused by [identity clipped] for [length of time clipped], so the first part I understand. It’s the second part that stops me in my tracks. How could that ever be a gift? Thank you.

Thank you to my reader who sent me this question, and to all my readers who write to me regularly from all over the world about difficult things in their lives, hoping to find a glimmer of hope, or light, or direction, or just someone to talk to. I am honored to get your notes and wish I could meet you all and have coffee with you, or sit across from you in my office and counsel you personally. I hope my responses have encouraged you in seeking out the help you need.

Perhaps there is no question in life more honest than this one.

The question, really, is how in the world am I ever going to see anything good come out of this horrible thing that has happened in my life?

What does my suffering mean?

What do I do with my pain?

When you have been abused, when you have been lied to, when you have been betrayed or abandoned, when you have lost someone you deeply loved, it can and almost always does feel like nothing will ever be right in your world again.

In fact, wounds that don’t feel like that aren’t very deep wounds. You know you have been dealt one of the most crippling blows life will ever deal you when you question whether you’ll ever recover.

So the question this reader asks is a valid one, and a common one.

“How could my darkness ever be a gift?”

I will attempt to answer this age-old question using quotes from perhaps the one author and one book that has impacted me most: Victor Frankl’s classic, Man’s Search for Meaning.

Frankl, a psychiatrist, spent several years in a Nazi concentration camp and lost many of his family members. The first half of Man’s Search for Meaning recounts many of his experiences in the camp and reflections on those experiences. The second half lays out the system of psychotherapy he created — Logotherapy — that helps people make meaning from their sufferings. Frankl writes,

If there is meaning in life at all, then there must be meaning in suffering.

This is true because life is suffering. Indeed, no one will get through life without it. If you’re reading this right now and you have never really suffered very much, then this post is all the more important for you, because you are one day closer to your time of intense suffering today than you were yesterday. It’s unavoidable.

Richard Rohr defines suffering as any time you are in circumstances you don’t like and are powerless to change them. I like this definition, because it allows us to see suffering on a much wider spectrum.

When you are in line at Home Depot, and really want to buy a hotdog and Coke on the way out, but you don’t have the money, you suffer a little bit. You feel a tiny sting of desire that will have to go unfulfilled. Of course in the scheme of things it doesn’t matter very much, and you probably won’t need to seek therapy over it, but it does bug you at the time.

When someone unfriends you on Facebook, it causes you to suffer a little. You wonder why. You wish you knew the reason, or that there was some way to find out. You wonder what you did wrong. You realize a lot of Facebook friends aren’t friends in real life, and you feel weird about feeling rejected, but if you’re honest, you know you kind of do. This will probably bother you a little, off and on, for a few days.

When a close friend lies to you, you suffer. It hurts. You wish they hadn’t done it, but they did. That wasn’t your choice. This will bother you quite a bit and you may struggle trying to figure out how to respond. You may need to seek the counsel of a close friend, or spiritual teacher, or therapist. You are really hurting now, and this will last for a while.

When you love someone who doesn’t love you back, it’s terrible. You feel empty, and rejected, and wonder why you’re not good enough. You suffer. You don’t know what to do, and again may need to seek reliable outside counsel. This can last for weeks or months. Without the right help, it can last for years.

When someone you love and trust abuses you emotionally or sexually or physically, you suffer very intensely. You didn’t choose it, or cause it, or wish for it. It was forced upon you. It was beyond your control and now because of the behavior of another person, you are suffering. So much, you don’t know if you’ll ever recover. You will, almost without a doubt, need a lot of help to move forward. You will need understanding friends and family members, some great books that can help you learn to think in new ways, and the guidance of a skilled therapist who can help you piece your life back together. You may well require medication for a while to help calm your anxieties so you can focus on your work in therapy.

The point of these examples is not to suggest a precise suffering hierarchy. People respond to different things in different ways. But clearly some suffering is much worse than others.

But life itself is suffering. You are constantly put in situations you can’t control. Things happen to you all the time that you would change if you could, but it wasn’t up to you when it happened. Every time this happens, it affects you in some way that feels unpleasant. That feeling of unpleasantness is suffering. Suffering is caused by desire for things you cannot have.

Frankl is right. If there is any meaning in life at all, there must be meaning in suffering. If there is no meaning in suffering, there cannot be meaning in life, because the vast majority of life is suffering in some way or another.

“What is to give light must endure burning.” — Victor Frankl

It is just now that I have gotten to the core of my reader’s question. How am I ever to find a gift in the suffering I endured? The reader has already endured the burning, but her question is really, “How does light come from this darkness?”

The answer is contained partly in Frankl’s words above. The light actually comes from the burning. The majority of the great things you will do in your life, most of the beautiful impact you will make on others in your life, will spring in some way from attitudes you formed when things weren’t so good for you.

Maybe you had bad parents and decided you weren’t going to parent like that.

Maybe a family member was an alcoholic you decided never to drink.

Maybe you endured spiritual abuse from an oppressive church leader, and decided you were going to expose religious abuse for what it is.

The light comes from the burning. But I need two more quotes to help you understand this fully.

When we are no longer able to change a situation, we are challenged to change ourselves.

Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way. 

Yes, the light comes from the burning. Good things emerge from terrible things that happen in your life. But there is a process to it.

Human beings aren’t firewood or candles. We don’t just light them up and off they go.

If you have been deeply, seriously wounded, how do you ever see light come from that fearfully dark place?

The light begins to emerge from the darkness of your life as you set to the task of healing. As long as the darkness remains dark, there will be no light. But as healing happens, the darkness itself is transformed into light.

As you heal, you begin, automatically, to make your mess your message. You become a beacon, an inspiration, and a light for those who are lost in their own darkness.

This is the real meaning behind that simplistic phrase, “When life gives you lemons, make lemonade.”

When bitter circumstances come your way, when things happen to you that you had no choice in, you must choose to add to those experiences the ingredients that will make that bitterness into something sweet, something pleasurable. This is what is meant by the term “redemption.” If you have a pitcher full of lemon juice, it won’t be useful for too many things. It will be offensive, maybe even painful, to drink. But when you add the right ingredients to it, that very same pitcher of lemon juice will become a source of refreshment for you and for others. You have redeemed it, by putting it to good use!

It all depends on what you add to it. Whatever caused the suffering wasn’t up to you. You’d have never chosen it. But now that the suffering is yours, what you do with it is completely your call.

That is the real meaning behind the quote my reader sent to me in her email. The box of  darkness is what is done to you without your permission, choice, consent, etc. But that very darkness ends up being a gift to you, and to others, as you redeem it, i.e., “get better.” I have already written that in the case of sexual abuse, seeing redemption come from those circumstances will probably require a lot of things and take a while.

But it will happen. A fundamental law of this world is that living things reach for the light, and instinctively respond to it and open up to it, and are nourished by it.

If you are in darkness, you redeem what has happened in your life by exposing those dark things to the light. The light of truth. The light of knowledge, education, and experience. The light of love. After a while, your darkness will be transformed into light. It’s inevitable. It’s the way God (or “the universe” if you’re not a spiritual person) made you. You cannot expose darkness to light forever without the darkness becoming light.

I was diagnosed with multiple sclerosis on December 5, 1990. I have lived with it for 23 years. It has caused suffering I could not have fathomed when I was diagnosed, and plunged me into unspeakable darkness at times. But it is in those moments of darkness that I have learned the meaning of all of Frankl’s words above. I didn’t choose this, it happened to me. All I can do is adjust to it, learn about it, and change myself, so that I become the kind of person who can inspire others in their suffering, which redeems my own. For me, this has required years of therapy, a lot of reading, prayer, meditation, and learning how to be honest with myself and those I love.

I hate having MS, but I love the person MS has given me an opportunity to become through the suffering it has caused. I wouldn’t trade it for anything.

This is usually what people say when they redeem suffering in their lives. They aren’t glad it happened, but they know they have become a better person as a result of it and because of that, they wouldn’t trade their lives for someone else’s.

I hope and pray you will be able to say this too. Submit to this process. Expose that darkness to the light and keep doing it. Your suffering will be transformed, your darkness will become light, and you will be free. That freedom will inspire and attract others and you will get so much joy from seeing the wounds of your life heal wounds in the lives of others.

That is how you will come to see your darkness as a gift.

 

 

How I Suffer and Keep Trusting God

suffer and keep trusting god -- man behind fabric wall

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Someone struggling with serious health problems wrote to me today and said, “Dave, some of the stuff you’ve faced with your MS is horrific. How in the world do you keep trusting God and believing he loves you?” What a great question. With her permission I have reprinted my answer, below, because I wonder if it might be helpful to others.

Question: I just don’t understand how you and God can have a relationship when you are suffering from such a depressing, debilitating disease. I want you to know I do not in any way pity you. I do not disrespect you as a person by drawing attention to your illness. But how do you hold onto this relationship when you suffer so much? I just can’t wrap my head around that. And by asking that question I feel so much like what people would describe as a “baby” Christian who is still caught up in why bad things happen to good people but I’m so tired of pretending I’m a grown up Christian. I want to know how you reconcile that. And I want to also add that I feel so sad that you have to go through what you go through. I hope in no way that you feel I am minimizing or trivializing your suffering by asking such an immature question.

Answer: I’m so glad you have someone of whom you can ask that question. I had no one. Unfortunately I’m not sure I have anything to say that will be that helpful. I’ll try, though. BTW, my illness is as much a feature of my life by now as the fact that I am bald, or a writer, or a pastor. It’s the most routine thing in the world for me to talk about. Don’t worry about asking.

Maybe the best answer to your question is that I have already tried the other options.

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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.