What You See Is Not How I Feel

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I wrote this piece about three months ago, as I was realizing that I was going to have to make some very difficult decisions about my work and the rhythm of my life.  Since then, I’ve left a job, started to make steps towards recovery, and tried to lean into the very difficult business of publicly naming that I’m sick.  This experience, although it has lessened somewhat in itsintensity, remains true for me and so many people like me who suffer from invisible chronic illness.

If you watched me yesterday, you might have seen this:

7:30AM: Ben takes dog on a walk, picking up a neighbor’s vehicle at the docks and bringing it back up the road for them.

11:00AM: Ben drives Michael to daycare to drop him off and returns to the house to work.

3:00PM: Ben does an interview for his podcast.

5:45PM: Ben goes to work, where he finishes organizing a new collection and shelving books.

8:00PM: Ben goes home.

Here’s all the in-between stuff you would not have noticed:

6:45AM: Ben wakes up. He wonders, “Is this the day I’m going to start feeling better?”

7:30AM: Ben takes dog on a walk, picking up a neighbor’s vehicle at the docks and bringing it back up the road for them.

8:10AM: Clearly, this is not the day that Ben is going to feel better. He comes home and lies down on the couch, as he can quite get enough energy to sit up at the breakfast table. Melissa brings him his breakfast in the living room while Michael runs around. Coffee is just not helping this morning. When Melissa needs to take a shower, Ben lays down on the floor next to Michael in the play-yard, trying to keep him distracted.

Melissa tries to put Michael to sleep while Ben levers himself up onto the couch. He tries to read, but the words won’t cohere into sentences. He ends up watching television.

Nap fail. Melissa is already an hour late to work. Ben says, “I’ll take Michael to day care.” He takes a deep breath, pushes through the wobbliness in his legs like a runner on the last stage of a marathon, and gets Michael to the car.

11:00AM: Ben drives Michael to daycare to drop him off and returns to the house to work.

Ben lies down on the couch and works through e-mails. It takes him three times as long as it normally would. When Melissa comes home from, he staggers into bed and sleeps.

2:30PM: He wakes up. It’s go time! He pumps himself up, gets his office set up, and does his interview.

3:00PM: Ben does an interview for his podcast.

4:30PM: He finishes the podcast and wobbles downstairs. Melissa asks, “Can you really go into work tonight?” Ben responds, “I’ll only do what I have to.”

5:45PM: Ben goes to work, where he finishes organizing a new collection and shelves books.

6:15: Ben finishes shelving the new collection. He’s beginning to limp and he hopes that no one notices. There’s a pile of books that need to be re-shelved. He figures he can get them done if he goes slowly over the next couple hours. He puts his feet up gingerly and reads.

8:00PM: Ben goes home.

8:15PM: Ben brushes his teeth and crashes into bed.

——————————-

What you see is not how I feel.

These types of days have been my experience, on and off, for most of my life.

I’ve been passing for well since I was nine and got ME/CFS for the first time.

Normally, I maintain the appearance of wellness by taking from other pieces of my life.  I sleep more, drop my more demanding hobbies, let housework slide, let Melissa walk the dog, crash super hard on my day off, and so on.  It’s a necessary adaptation, and one that has been useful for me at times: it’s enabled me to keep jobs, maintain relationships, and hold onto hobbies that otherwise might have been swallowed up by sickness.

Before I became a dad, I could lay on the couch on my bad days and rest without hurting anyone. Now, those bad days mean that I’m not engaging with my son, not watching him grow, and making my wife be a half-time pastor and a full-time mother.

I’ve been sick for three and a half months now: the longest stretch I’ve had for several years. (Note: I’m now up to six months and running!) There never seems to be quite enough time for me to get better. Either I’m sick, or my work picks up, or Melissa’s work picks up, or Michael is sick or teething or not sleeping, or Melissa is sick. My well-honed bag of work-tricks (e-mails in bed are perhaps my favorite), no longer work to give me enough space to recover while still appearing like everything is okay.

The first person I have to “pass” with is myself.  My interior landscape is propped up by a thousand small mental negotiations: I’ll feel better when this next project is done, I can change my habits, I can eat better, I can go to bed earlier, I can work more efficiently, I can find a couple days just to rest.

It hard to admit that I am not a normal young adult male with a few health issues. For the time being, my career, my hobbies, my passions, are confined by my very, very real physical limitations and the immense price I pay whenever I ignore my limitations.

It’s terrifying for me, in all honesty, to name this.

I’m not terrified that you won’t accept me.

I’m terrified that you will pity me.

I don’t want to be your latest Tiny Tim. Despite all of this, I’ve made something of my life. I went to a top college, married an amazing woman, became a ministerial innovator, worked with the forgotten and marginalized, fathered an amazing boy, and found outlets for joy and connection that my super-sick, super-isolated nine year old self could not have imagined.  I’ve found ways to make meaning in my life and use my sickness as a resource to become a more complete human being.

But I do need your understanding. I need you to understand that when you say “How are you?”, I may say, “Fine,” even when I’m not, because I just don’t have the energy to get into it right now. I need you to understand that sometimes it will look like I’m giving you 50%, because I absolutely can’t give you anything more. I need you to understand that when I say no to your social invitations or work opportunities, it’s because I simply can’t pay the price that saying “yes” would entail.

I also need you to understand that I didn’t choose this and I’m still figuring out what being sick means. I always thought I would grow out of my illness. I always believe that in a moment like this, I would be in the thick of things, building community, going to marches, fighting for justice, being a mover and a shaker.

I need you to understand how painful it is to learn that enthusiastically following my ideals would mean writing checks that my body just can’t cash.

So, please just bear with me.

I may be as well as I’m making myself out to be or I may be far worse.

And depending on the day, neither you nor I may really be able to tell the difference.

21 thoughts on “What You See Is Not How I Feel

  1. You are loved, my friend. ME/CFS can be devastating at times. I´ve seen the struggles of another friend with this Dx. Thank you for sharing your challenges with us. WE can offer support, understanding, lift you up when you need it. Just flat-out ask, and ye shall receive. Perhaps resetting your sails can help. Only do those things you
    must. Reconsider diet. Shun wheat, sugar and dairy? Seems to work with other auto immune diseases. Again, let me stress: you are loved–and the Holy Spirit works through us all to lift one another. Let me know if there is anything I can do to help out. Happy to discuss at your request. Peace!

    1. Thanks Adele for your support and your love. I got tested for all those fun food sensitivities about a year ago, and appear to be quite normal, (but am getting to the point I’m willing to try anything!) It’s so comforting to know we have great friends like you on the island.

  2. Hi Ben,
    Thank you for sharing…I was diagnosed with CFS when I was in High School. I think I have been having bouts for 22 years of childbearing and motherhood. I am also diagnosed with Hypothyroidism and Hashimotos. I can toootally relate to how you feel and I commiserate. Periods of stress also tend to bring on bouts of CFS symptoms in my daily life. It has been especially hard during my married life being judged by my in laws for not keeping a sterile household (which isn’t my nature anyways) during times when I was just purely exhausted. It really hurts to be judged by uncaring folks…not everyone understands or even cares to understand. Some people just plain chose to not even believe that an immune disorder is even an “excuse” because of, as you stated, it’s invisibility. Hang in there and know that you will have good days and many of them are ahead. It’s hard when your mind wants to plan and get things accomplished but your body says no…it’s so important to embrace who you are, and to recognize your work and purpose outside of tangible physical accomplishments. Thank you for sharing.
    Jen

    1. Thank you sharing as well – I didn’t realize that we shared a disease! (And I can completely understand when it comes to keeping up house; there are times that there’s really just nothing you can do!) Many prayers as you folks embark on your new adventure in VT!

  3. I knew that young man you were. Knew of your health issues. But I never thought of you as the next tiny Tim. I actually worried you would see through the times I wasn’t as good as you. Like that time we were trying to learn c++. Now I have a son who is a type one diabetic. Everyday is a struggle and a fight. But I see the same things in him. Brightness and a hope that he may grow out of it. Reading this was helpful to see things from the other side. God Bless! Keep leaning on God and write more!

    1. Thanks Chris – and I remember our friendship in those years as one of the most refreshingly normal parts of my life during those years where I otherwise couldn’t be a normal kid. (In particular, the long nights playing Aerobiz Supersonic, building my airline empire on routes from Los Angeles to Tokyo…) And, just for the record, all I currently remember from those C++ programming expeditions is that there is a language called C++ and that I failed to learned it! 🙂

  4. Wow Ben, your admission to having ME/CFS had me totally floored. As I had no idea what the initials stood for, I looked it up. As it was likened to be on chemotherapy to the effects on your body, and having had chemo I empathize with what happens to you when the disease is taking its toll on you. You are an amazing person, getting done those things that you have done and not letting the disease become who you are. I will keep you in my prayers, that you have more good days than bad. Keep up the good work, you have a lot to offer.

  5. Oh my, dear Ben,
    You have my understanding. I have known of this life robbing disease for decades. My lovely niece, now mother of four, was robbed of her middle and high school years at a time when teachers and administrators in her town were totally unfamiliar with CFS, many doubting its validity, making no attempt to reach out and throw her a lifeline to connect her with her peer group, some nearly spiteful. Her ever diligent parents had to fight for whatever services she received. She received her education, delivered by a public school tutor, at home, sometimes at bedside, for 2 hours each school day unless it was a day on which she could not lift her head from her pillow – there were many such days. She was not allowed to graduate with her class because she was short 1/8 credit of her PE requirement. Though she was able to sculpt a manageable and happy post high school education and career, she has suffered relapses and she is never really free of symptoms. Deliberate nutritional choices and therapeutic massage (she married a massage therapist) have helped but there has been no panacea.

    You, just like my niece, have managed to sculpt a life that aligns with your talents and beliefs. You smile, you ooze fun and joy, put one foot in front of the other and attempt to keep moving as well as possible – what an incredible effort, what energy it must take.

    Thank you for your incredible efforts and for trusting your community enough to share your reality with us.
    Much love to you and your family,
    Mary

    1. I understand that school journey all too well. (And I’d be curious to hear what dietary choices she made: that’s not something I’ve investigated much so far.)

      All of this so much easier when living in a supportive community like this one!

  6. Beautifully written and really, a reminder to me that there is so much we don’t know about others. I too, have had some debilitating struggles. We all need to hold each other up! Love you.

  7. Hi Ben
    Thanks for sharing your struggles. We all have them and have to find a way to work through them. Some are more difficult than others. On the surface and from the outside, our lives can seem envious and “perfect” to others, without knowing what we do to survive. We all have our mental and physical struggles to work through. One thing I’ve learned from you and Melissa, is that we don’t have to do it alone. God, prayer and others are always there for us if we only engage. Gob Bless! Keith

    1. Indeed we don’t have to do it alone! (And hope you get a chance to come out and visit us this summer!)

  8. Thanks, Ben, for sharing so honestly. I don’t think there is anything harder than pretending to be ok when you are not feeling ok. Prayers and understanding- taking care of yourself is first priority, but so challenging when it is not even clear how to do that! Hugs-

  9. Am forwarding this to a dear friend in Austin who just this week acknowledged her illness to me. Thank you so much Ben for trusting us all

  10. Oh, Ben, I remember the days at Green Street when you were just a little guy. You had such a positive attitude and tried so many things, you were amazing – still are!!! I had no idea when I read recently that your health was not so good that things had gotten so bad. I’m just sorry you live so far (Portland is NOT that FAR), that I can’t just drop in to take care of you until this bout diminishes. I watched my mom live with her chronic Asthma and life was not always easy for her. I can’t imagine how you have accomplished so much with this illness. Please know that you’re in my prayers – love you and Melissa, and that little guy is adorable!! Thanks for being in touch!

  11. I believe I can only begin to understand other folks after I’ve walked a mile in their moccasins. Your account helps me try on yours, even if they’re to big for me.

  12. Dear, dear Ben – I just started to write this but a call came in and I was afraid it was the dentist office saying I wasn’t there but should be. In the process I lost what I had started to write, so am starting again (it was just a reminder for next week).
    Uncharacteristically, I am at a loss for words. I had known about your illness but reading your words my heart is aching and breaking. Your journey, the path you must walk on, illustrates to me one of the greatest mysteries of the way life is set up for us on this planet. There simply is no knowing why such hurdles are placed in some lives. All we can do, in Martin Buber’s words, is take a leap of faith. Knowing you, I am sure you are doing that.
    I offer myself up to you. Any time you want a shoulder to cry on or lean on or just talk or someone to help in any way I will be there, post haste. My cup runneth over.

    1. Thank you Eldon – and your compassion is deeply, deeply appreciated. We are so blessed to have you as part of our lives!

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