Marissa: Welcome to the 12 Months, 12 Journeys, 12 Lessons podcast. This show features monthly a different health condition or cause. The goal of this show is to learn from and uplift our guest. My name is Marissa Christina from Abledis.com, and today’s guest pumps me up.
Dale Lehn is a T5 paraplegic that has been using a wheelchair since 2005. After returning home from rehab, Dale was faced with the reality of living life in a wheelchair. He has used his time diligently to create two very special endeavors – one being an independent assistance tool known as My4Hands and the other as a cofounder of the support group called Chronic Pain Anonymous.
I’m so pumped and proud to welcome to the show Dale Lehn. Hello, Dale. Welcome.
Dale: Hi, how are you today, Marissa?
Marissa: I’m blessed. Thank you so much.
Dale: Me too.
Marissa: Great. This month’s 12-12-12 project is focused on learning about chronic pain. Normally, I just start the show jumping right into breaking down the condition. But today I want to back up a bit because from what I understand, chronic pain is considered a symptom of something like a surgery, an injury, or a tumor. Dale, let’s just jump in right into your personal story and understand what life event led you to living with chronic pain.
Dale: In the summer of 2001, my family and I were driving back from our beach house and I sneezed. When I sneezed, I felt shocks going down my arms and my legs. I had been in an accident a couple years earlier, and it injured my neck. I thought it could be related to that, so I called my orthopedic surgeon. He said, “No, that would not affect or cause that kind of condition.”
He wanted me to go in for an MRI the next day. I went in for an MRI and discovered that I had a tumor growing inside my spinal cord at the T5 vertebrae. What it was doing, when I sneezed, it put pressure on the tumor, which put pressure on the spinal cord which affected the nerves radiating out from that, and that’s what caused the shock.
What I needed to do was go in very quickly and have surgery to have it removed, which I did. I’m very fortunate that I lived in Baltimore, Maryland, where we have Johns Hopkins University, one of the fine institutions of its kind in the world. There are not a lot of surgeons who have had experience with this type of surgery. It’s not a very common occurrence; it’s very, very rare. Fortunately, they had surgeons there who have had great experience at performing this type of surgery.
I went in, had surgery, and got to live in Hopkins for 24-25 days. In the process, at first I couldn’t walk because the nerves had been shut off during the surgery. Once that happens, muscles in our legs and everything have like RAM memory like in a computer. They had to relearn, had to be retrained. I had to learn how to walk again and how to move around. I was able to regain the use of my legs. I did have some limitations and had some balance issues. I walked with a cane, but I was fortunate enough to be able to learn how to walk again.
Shortly after the surgery, I started to experience pain in the area around T5. Above T5, I had normal feeling, but below that I had lost all sensation in the surgery – sensation as far as touch and sensation as far as being able to tell hot and cold and things of that nature. At that area around T5 I started to have pain, and it was intermittent pain.
I went back to my surgeon, and he says, “You’re one of those who is going to have some issues afterwards.” It doesn’t always happen, but I have what is called nerve ending pain. If a person loses a hand or an arm or a leg, they sometimes have phantom pain – pain from the area that is lost – or it can be called neuropathic pain.
That’s what I had, and it started to intensify. On a normal day, I would find myself, on a scale of one to ten, a two or a three or a four, and some days it would go up to seven or eight.
Marissa: I want to step this back real quick, just for the listener. T5 is describing an area of what? The spinal cord where this tumor was removed?
Dale: The T5 vertebrae, which is like at your breast, your chest.
Marissa: Then with your saying the phantom pain, is this the way phantom pain works? I’m trying to get an understanding. Say for example you feel maybe a feeling in your foot that is experiencing pain, and your brain is receiving an improper signal saying that you have pain there even though you may not be able to move your foot. Is that what is happening?
Dale: All the pain actually radiates around my chest in a band. It does not go down my leg or foot. It radiates from my chest, and it feels like either I’m being poked by a pin or a knife or I’m being burned. Those are the sensations that go around my chest, and they radiate. They don’t hit in the same place all the time. There are times when the pain becomes very intense, and then it shoots down my right leg, at three or four.
Marissa: What I gathered was two types of pain – an acute pain and a chronic pain. Let’s start. What is acute pain?
Dale: Acute pain is a pain you have, let’s say, if you break a leg or break a finger or burn yourself. That pain is going to be very acute and it’s going to be intense for a period of time, but it’s going to go away. It may not last. Maybe it lasts two months, three months, but it’s not going to last past six months. When a pain continues to be there and you continue to be affected by it, then it’s chronic pain.
Marissa: I’m kind of curious. Is there pain management? Is that where the word, for chronic pain, the pain management? What does that mean in your experience living with chronic pain?
Dale: My experience of pain management is dealing with doctors who deal with pain management, often they deal with different drugs and narcotics and opiates or other kinds of medications. What they end up doing is dulling your mind or your being.
One thing I’d like to say right now is that I’m a recovering alcoholic. Dealing with opiates, narcotics, is not anything that I wanted to do. I put those off the list for the doctors right up front. I know what it’s like to be addicted to something and I know the fog that happens in your life when you are that way. Also, I know what the fog is like when you’re in pain. The pain fog is a little better than the addicted fog, because the addicted fog happens all the time. I wasn’t interested in that.
Marissa: That leads me into the question – something that really struck me was this relationship between pain and depression. Within your own experience or maybe even talking with others in the chronic pain community, do you see depression as a large concern then when you’re dealing with medications such as that and then chronic pain itself?
Dale: Yes, depression is definitely something that I deal with. It’s something I’ve dealt with also from having a very active business and life career and life experience and then coming into a condition like I am now and abruptly having to change. Depression also affected me there, so I have dealt with depression. I’ve dealt with depression through medication and through therapy. I think you have to do both.
Marissa: Which leads us to one of the blessings that you cofounded. You started a fellowship known as Chronic Pain Anonymous. Talk a little with me about why you started CPA and what it really means to you.
Dale: I found that in my condition, they did put me on some medications that weren’t opiates but they also dulled my mind. What they did was they tried to even out the pain so I wouldn’t feel the intense ones as much, but I found my inability to read because I couldn’t concentrate. I found on some of the medications that it really affected my life anyway, and I wanted to pare down and decrease the amount of those medications I was taking.
In studying, I started looking at other ways of dealing with it. I worked with meditation. I worked with massage therapy, yoga when I could still walk, and acupuncture but was not able to get any kind of relief. I found myself withdrawing from my family and friends. I found myself making excuses for not wanting to do something. I found myself in many of the ways of how I was when I was an active alcoholic.
I was talking with a friend of mine in the fellowship of AA, and he said, “Why don’t we see if we can use the steps of AA to help you get through this?” because they’ve been used in a lot of other cases. They’ve been used with alcohol and narcotics, with overeating, with other addictions and other conditions. I thought, “Well, let me give this a shot.”
I started writing out the 12 steps of AA and converting them to what it was like. I started writing about it and journaling around that. I found myself – instead of fighting my pain – I found once I accepted that I had this pain and that my life was unmanageable because of it, I found that I was able to start looking at and my relationship with my pain started to change. With that relationship with the pain starting to change, my own ability and relationship with life around me started to change.
Accepting the pain doesn’t mean I give into it and give up and let my life just go as it is and that’s the way it is. It means I accept it, I understand it’s there, and I start dealing with the unmanageability part of my life and start looking at ways to go about to improve my own life around the condition of living with the pain.
About four months later, I ran into another fellow who had another kind of pain but he was using the 12 steps. The one thing about dealing with the 12 steps, it’s much better when you have somebody else to talk to and share. We started a meeting in Baltimore, and we had our first meeting in 2004.
Then we started the online meeting and trying to reach out to people with the website and met a person by the name of Judith in Arizona. She and I have been very active in developing Chronic Pain Anonymous. We’re now in almost every English-speaking country. We have people who join online meetings or the phone meetings from Great Britain. We have people with meetings now in 17 locations in North America. We have very active phone meetings. We have online meetings.
It’s just a growing entity, and we’re about ready to publish our first book. It’s “Stories of Hope,” which is small snippets about people who are involved in how they’re dealing with using the 12 steps in their life. The thing about chronic pain and dealing with a program like this is you want to give it away. You improve yourself by giving it away to other people, so that’s what we’ve been trying to do.
Marissa: That’s really fascinating. To the listener, for those that know, I personally suffer from a chronic illness. I personally attended two of the phone meetings during this research, and the fellowship is really fantastic. I highly recommend that if you need a place of fellowship that you definitely check it out. At the end of the show, I’ll be sure to provide you with some additional information.
Dale: One thing I want to jump in there and say, it’s listed as Chronic Pain Anonymous, but right now we deal with people with chronic pain and chronic illness. Chronic illness people had no home, no place to go to, so we are opened up to people who deal with either chronic pain or chronic illness. We’ve increased our fellowship that way.
Marissa: Dale, I first learned about you from an article over at Disability Horizons. A quick shout out to Martin and his team at www.DisabilityHorizons.com. If you guys haven’t gotten a chance to check out their site, it’s really fantastic. Be sure to check that out.
The article was titled “My4Hands: Lending a Helping Hand to Disabled People.” To me, what really moved me was your desire and your willingness to attain independence. You created this fantastic product for yourself and the disability community called My4Hands. Tell me about this project.
Dale: When I got home from the hospital, the tumor came back. I should tell the listeners, the tumor came back in 2005. I went back in for surgery knowing full well that I’d come out paralyzed because if they do the surgery the second time, the chances of me coming out and being able to walk again were very minimal. I came out in a wheelchair, and my life had changed.
Up until this point in my family life, I had been the main cook. I love to cook. I provided for my family. When you have a family, everybody has different jobs, and that was one of the jobs that I had. Now with life in a wheelchair, I was no longer able to do that. As part of my own reintroducing myself back into my family and the activeness of our life, I needed to find a way to where I could cook.
I looked for different kinds of ways to get a work surface that would work on my lap. Many of them slid. They would slide off. I used cutting boards, but one time I was moving around the kitchen. The knife slid off the cutting board and landed right in the toe of my shoe.
I started looking at ways to find a surface that would hold things tight. When you can’t feel, you have no sensation, a lot of paraplegics end up getting burned because they don’t feel it. You put something hot in your lap, and you can get burned very badly but you don’t feel it. You don’t know it. I wanted something that wouldn’t transfer heat through.
Through a lot of work, I ended up with a product that is made out of polyurethane and has a very unique coating on it to where things will not slide of off it and it holds tight to things. It holds tight to my lap and it holds items. Cutting boards or knives or bowls or grocery bags or whatever you put on it, it’s going to hold very solidly to it. I can go up and down ramps and all over the place.
I developed this product, and I called if My4Hands. How it came to that name is when I came home from the hospital, I realized that I needed four hands to do what I wanted to do – two to move my wheelchair and two to carry things. Now I have it with My4Hands. It’s a product that is available on the market on my website. It has taken off, and it has just been very wonderful.
Marissa: That’s exciting. What would you say right now is your current accessibility setup?
Dale: I use a wheelchair. I use a manual wheelchair, because I want to stay as fit as I possibly can. I don’t want a power wheelchair. I’ve seen so many people get into a power wheelchair and they end up gaining a lot of weight. Since I got in a wheelchair, when I was in my wheelchair I actually did gain weight. I’m 6’ 3” and I got my high about two and a half years ago. I think I was 262. I went about a diet on my own, and I’m now down to weighing about 192.
Marissa: Wow, congrats.
Dale: You can diet on a wheelchair. You just have to watch what you eat and stay as active as you can. That’s why I use a manual wheelchair and go everywhere. I have a manual wheelchair. I have a van with a ramp that I’m able to go up into the back of the van, able to transfer into a car seat that comes back and meets me. I jump into that, and then I’m able to drive with hand controls.
I’ve traveled to Europe. I’ve been able to travel domestically by myself. My wife and I went and visited our son in England this past March. I’ve been trying to be as active and as open as I possibly can. I try and have as minimal of doors that are put there in front of us, especially in the disabled community. I’m trying to ignore those as much as possible.
Marissa: Are there products in the pipeline that you’re developing as you’re going through your own experience that you can share with us, or are you just focused on My4Hands right now?
Dale: I have three other products in the pipeline, but I can’t really share about what they are.
Marissa: We’re looking forward to it. It’s exciting. Dale, learning more about your condition, I’ve been exposed to several different levels of lessons. Is there a particular lesson that you wanted to share with the listeners today, something you feel you wish you had heard at some point along your journey thus far?
Dale: It’s a lesson that I’ve learned a long time ago, and it’s something that’s key for me in how I am both with my pain and my condition of being paralyzed. When I get into a difficult moment, just knowing that this too shall pass. So many of us concentrate on those difficult moments and we obsess on them and they become overbearing to our ability to move forward. They slow us down or hinder us from whatever is happening around us. Just whenever you get hit with a difficult situation, just realize this too shall pass. It’s only a momentary thing. Our life is a journey, it’s a moment-by-moment journey. Live in the moment, and understand that the next moment will be different.
Marissa: That’s beautiful. Dale, thank you for being open to sharing your experience with me today. Thank you for motivating me to look within and reevaluate what I’m capable of achieving. I’ll share with you a personal story, and to the listener, that recently I was asked to use a walking stick, something that threw me for a loop. Dale, just going and seeing your experience has really helped push me over the edge and give me what I need to realize that, like you said, this too shall pass. I wanted to thank you for that.
I’m really stoked about the future of My4Hands and all your other ventures. I’m sincerely wishing you all the best that this life has to offer.
Thank you all, and much love.