Living the Life We Have
Living the Life We Have

Categories: Health

Photograph of Dr. Dan Gottlieb with his grandson Sam

By Guest Blogger Dan Gottlieb, Ph.D, psychologist and author

Several years ago, someone asked me if my practice specialized in people with disabilities. I replied, half jokingly, that I really specialized in helping people live with stuff they didn’t necessarily want to live with, but had to. That would include disabilities, but it would also include any chronic illness or a family member with a chronic condition. And it would also include people who had a traumatic history or a body they didn’t like. Or caregivers who never bargained for the life they have.

So I guess my practice could include almost all of us.

How do we live with something we never thought we would have to live with? How do we live with a body or a mind or a life we don’t particularly like sometimes?

I think part of the answer comes from Marley, my daughter’s adorable three legged pit bull. When people first meet Marley, they react with sadness for what they believe she must endure. They inevitably bring up all of the things Marley can’t do, and they feel sorry for her. Meanwhile, Marley doesn’t suffer with her three legs. She just has three legs.

But when we wind up in a wheelchair or in a hospital, we may suffer. We may suffer because we think we are not living the lives we want to have, should have or deserve. Marley, on the other hand, is simply living the life she has. Marley doesn’t have those great big frontal lobes that humans have. Those frontal lobes where we craft all sorts of stories about who we are and who we are not, what will happen in the future and what life should be like. It is in those big frontal lobes that we pass judgment on ourselves and others. You see, Marley’s reaction to her three legs really underscores that having a mind is not all it’s cracked up to be!

So we may suffer because of the stories we tell ourselves about what our pain means. But we are human, and we tell stories. But we may also suffer because we think something has been taken from our grasp. Whether it is dreams of tomorrow or memories of yesterday, we may feel like we have lived through the injustice of a theft. And our problem-solving brains always look to restore what we have lost.

And that can be very healthy in that it can motivate us to make things better in our lives. But the desire to find personal justice can also be self-destructive. I know so many people who feel that their lives are in limbo and that life will begin when…. Every day I hear people who are waiting for their spouse to change, for the weight to come off, for improved function, for their brains to function differently and on and on. It breaks my heart to bear witness to these good people whose hearts are closed so tightly that their spirits are not getting the sunlight and nurture they need to grow.

I used to hate my body, calling it a terrorist. I resented that I had been so good to my body, and it felt like it was so mean to me. And then, I began living my life more fully. I began to enjoy my work, my friends and the love I felt for others. I didn’t think much about my body until I developed a severe double pneumonia two years ago. I don’t know if I was close to death, but I sure did feel that way. And as I gasped for air, I realized that all my body was doing was trying to survive in the face of this horrible bacteria. I felt at one with my body – that we were finally working together in order to keep me alive.

This was the beginning of a great sense of compassion I feel for my body. It works hard, and it suffers. When I go into dysreflexia, my body is in crisis but does not know how to repair itself. My body feels as though it is desperate for remedy, and I feel compassion.

How do we live with something we never thought we would have to live with? We cannot decide what kind of body or mind or history we have, but we can decide to choose to try to be positive about life. And once that is done, we can learn to be more compassionate with ourselves. Not self-pity or self indulgence, but a sense of understanding and kindness for the person we are. Nothing correlates more highly with overall happiness than self-compassion.

Dr. Gottlieb has been a practicing psychologist and therapist for 40 years. He is also the host of the “Voices in the Family” radio show on WHYY, Philadelphia’s NPR affiliate; and author of “Letters to Sam,” “Wisdom of Sam” and “Learning from the Heart.” Dan is a frequent contributor to The Huffington Post, and answers questions each week in the Christopher & Dana Reeve Foundation’s “Healing the Mind and Heart” discussion forum. He is also a public speaker, proud father of two daughters and blissfully happy grandfather of Sam.

Note: This post also ran earlier this week in the “Healing the Mind and Heart” discussion forum on the Christopher & Dana Reeve Foundation website.

29 Responses to Living the Life We Have

  1. Yuri says:

    You need to take a description of your job to the doctor and explain why you can not perform the duties. Most doctors will complete the paperwork needed by your employer. If you are unemployed, then you need to go to the social security office and file for disability. You will need to provide records of the disability treatment and a letter from your doctor explaining what the disability is, whether or not you can work, or be retrained in another field. Also your doctor will have to determine whether or not this disability is permanent. If it is, they you will have a fight on your hands. You will be denied at least once and may have to get a lawyer. It took 4 years before I received my disability, but I received back pay for all but 5 months of the time. That is a regulation put forth by the government. As for lawyers, you hire one and they get 25% of your back pay. The government sends them the check. Good Luck.

    • Dave D. says:

      This isn’t surprising. I became disabled in 2007 due to meningitis. I found the doctors use the little chuckle method themselves, it’s easy to laugh at the plight of others when you have a degree in hand and a place in the hospital system. I used to believe in this country, I honestly did, in the pursuit of happiness, but I know now it’s lie. Since my disability, I’ve lost my job, my house, everything I worked 30 years to acquire. Now I look out my window and see people working lawn service, in restaurant, everywhere. I couldn’t find a job, even healthy, nowadays. I’ve been a U.S. Marine and worked 15 years as an electrician, too. In the end, the weak get pushed out of the way. The SSA system and the checks it gives seem to just be a way of keeping you on the sidelines and saying OK, now be quiet and take your pennies. On the flip side, people are getting creative – resorting to selling drugs, working under the table and hustling. I never thought I would feel this way but yeah, it’s not good especially for those who legally paid into a system. I have a feeling the system will not hold out much longer, either. We have become a country dependant on the government to help us, especially since the Boomers started retiring.

  2. Rhon says:

    I went to see my dr. and he asked if I wanted disability. I told him I’d like to work as long as possible. Wasn’t sure if I qualified. He said it’s the only way you’re gonna get out of homelessness. He said it with a chuckle in his voice. And said the shock treatment is required of anyone getting disability. Why’s this? I noticed people who applied have to see a shrink and they generally FIND a reason. Dr. said it’s to help them adjust to being disabled. This true?
    -Rhon

    • Disability.Blog Team says:

      Hi Rhon,

      We’ve never heard anything like this. However, if you have questions about Social Security disability benefits such as how to apply, if you are qualified, etc., you may wish to contact SSA directly at 1-800-772-1213. Representatives are available Monday – Friday from 7:00 a.m. – 7:00 p.m.

  3. Kathy M. says:

    I have a dear friend, age 59, with terminal cancer. He has not been able to work since August of 2011 and now receives social security disability. He was not able to afford COBRA through his former employer and has more assets than allowed to be able to receive Texas Medicaid. Why does he have to wait 2 years to be able to receive Medicare benefits? It is apparent that he will not live that long. Is there any other medical care available to him in his situation?

    • Horace says:

      Two years wait? Well, that is a short time. I was waiting for four years and when I reached 62, requested an early retirement, and then I was getting SSI, $360 per month and another around $350 per month retirement. That is called helping all older people? I am 63 now.

    • Nancy says:

      I am pretty sure if you qualify for SSD, you automatically qualify for Medicaid. It’s pretty crappy as doctors are not required to participate.

      • Steve says:

        Medicaid has nothing to do with SSDI. The main requirement for state funded Medicaid is to be poor. Very, very poor. No disability required. To qualify for SSDI you must have a totally disabling condition that meets Social Security requirements. You do not have to be poor. Medicare is associated with SSDI and you are normally eligible for Medicare 18 months after you become eligible for SSDI.

      • Disability.Blog Team says:

        Steve is correct. Medicaid eligibility has to do with income, and is not linked to Social Security Disability Insurance (SSDI) payments. Individuals 65 or older or those younger than 65 who have been entitled to Social Security disability benefits for 24 months can receive Medicare. For more information, visit http://www.ssa.gov/pubs/10043.html#a0=2.

  4. ABD says:

    Can someone tell me what the time period is between long term disability insurance policies? So in other words, is there a break in disability coverage? I had disability insurance coverage with my prior employer and my new plan started 4 days later. The new plan says that I am not covered for a current disability because I had a break in coverage. My health insurance says it would be ok if I did not have a 7 day break in coverage. Please help me, my insurance company is a scam!

    Thanks,

    ABD

    • Disability.Blog Team says:

      Hi ABD, I believe it depends on the specific terms of the long term disability policy you have. You may wish to contact your state protection & advocacy (P&A) service to see if they can provide further information. Find contact information for your state’s P&A by visiting http://www.napas.org/en/ndrn-member-agencies.html and choosing your state from the list under “Select a State” on the right side of the page.

      • Anthony S. says:

        Gentlemen,

        Please STOP passing the buck! The ADA ACT is quite clear it’s unlawful to deny goods and services to a disabled individual and we’re not just talking about having a sticker for your review mirror or a place to park close to the door of a facility so I can get a wheel chair in the building..making sure their door opening is wide enough to get the wheel chair in…it’s QUITE CLEAR DENIAL OF GOODS AND SERVICES…no where in the ADA act does it say that a lapse in insurance coverage of 7 days cause the denial of continued health insurance. And you then advise this disabled person to an advocacy center is a pure waste of time…these people have broken the law…they should be severely punished..and heavily fined.

  5. Duane W. L. says:

    These serious thoughts of the above commenters show me some things that I’ve apparently not experienced. I have a form of depression, called dysthymia, that has plauged me probably most of my life–things have been terrible at times, just recently in fact, but I know that my life is relatively peaceful compared to some of the above. I am challenged daily, but now am stable and continuing on in some direction with hope. Thanks for the thoughts.

  6. Yelena says:

    Dear Sir/Madam:
    I would like to describe the situation which has taken hold of my husband and me, along with our daughter. On September 28, 2010, we moved to the United States for permanent residence. My family and I are here legally and we all have green cards. In February 2011, I was hired in Snellville. My husband planned to go ro work as an auto mechanic. In May he also landed a job, but was not able to show up because he suffered a stroke, which resulted in kidney failure, impaired eye sight, impaired mobility, constant dizziness, and severe weakness, all of which has confined him to a wheelchair. Because of this, I had to work fewer hours, because my husband requires 24-hour care and I am the only one who can take care of him. Because I was not working full-time, my employer was unable to provide me with health insurance. I therefore went to the department of family and children’s services. There I was told that we do not qualify for any help other than food stamps, and food stamps only because we have an underage daughter. I tried to appeal this decision but to no avail. Later, we applied him for disability (because we were told that my husband’s condition rendered him disabled, as he is unable to take care of himself or work) but this was also denied. I again contacted social services so that my husband could receive Medicare because he was diagnosed as having ESRD (end stage renal disease). Their response was that my husband will not receive Medicare, despite having such a diagnosis.

    We find ourselves in a difficult situation. I was forced to purchase medical insurance PCIP for my husband as otherwise he would not have been able to receive dialysis (I have two warning letters from the dialysis center stating that they have accepted us as patients on the condition of providing proof of insurance). We are currently living in my father-in-law’s house; however, this house is currently for sale and we will soon find ourselves to be homeless, as we are unable to afford to rent an apartment or house. On my $550/per month income, I pay $264 for my husband’s health insurance as well as car insurance, utilities, gas, and food. The $197 food stamps we receive do not cover the necessary additional food expenses taking into account my husband’s condition. Furthermore, since the PCIP insurance does not cover a large portion of the cost of medication, I have to also somehow pay for this expense as well. We consulted with several rehabilitation centers which would provide necessary 24-hour care (in-patient) for my husband so that I could work more and provide for my family. Not having Medicare or Medicaid, being denied several times by the SSI office, and having only 2-week rehab coverage from our PCIP insurance, I have to basically pay for such a rehab myself. How can I do this?

    Please help! Where can we receive help, and what can we do in such a situation? How can we further survive in this situation? Are there any other programs that we can apply for to obtain rehab care, Medicare or Medicaid, or SSI income for my husband?

    Sincerely Yours,
    Yelena K.

  7. Russell F. says:

    Can you please refer me to a group or an agency that caters to college graduates with disabilities? I am a 58 year old college graduate in the Boston area with a BS in Social Sciences and a partial completion on an MA in Counseling Psychology. I have been dianosed with ADD, a math disorder, depression, and a non verbal learning disorder and would like professional employment. I am willing to relocate if necessary. I am desperate for professional employment.

    • Brad says:

      Craigslist is free, put a sign on your car, put up flyers in coffee shops and laundry mats, go into a business and tell them who you are, grab a business card and call them in two weeks. I am justing starting out as well and these ideas have helped launch my young career.

  8. Jack W. says:

    How can I be sure that I am getting the amount of disabillity I should be getting?

  9. Dean Tyler E. says:

    White house disability call – I Dean Tyler E. have a record of disability. I have a record that my family is an imminent danger. I have a record as a victim of crime compensation and a federal EEOC case. I have recent record of homelessness, unemployment and our only benefits are my own physical treatment + medical recovery. I have a record of an applied behavioral analysis of SFL. It’s simple, the state and local agencies ONLY participate in passing the buck – SSI, VR, EEOC, vocation, education. The state is a FORCE causing disabilities and making causes for wrongful death.

  10. Robert D. says:

    I am looking for a group that is interested in developing services for the disabled in housing, transportation and enployment. I am disabled myself so I understand the need. I sit on transportation advisory committees both at the county and state levels. I live in a building designed for the disabled and I see how I can inprove the apartments. Can you help?!
    Thanks, Bob

  11. Debra AN says:

    I appreciate all of the replies of all disabled persons. As I am also disabled. I continue to stay on the path of never giving up, continued education and the determination of being self supporting. I gave all I had in the decades of employment in healthcare, and so many other jobs along the path of my life; it has been seven years of healing my body and mind. I know I will find desirable gainful employment again. Patience along with always looking for the positive aspect in life will lead my journey daily. I know I must except chronic pain as a part of my life; and that is all it is – “a part of my life’.

  12. Lisa says:

    Acceptance can be a challenging yet liberating process. In my work as a physiatrist, and approach to my own life, I often say,
    “Maybe it didn’t look like this in the catalog, but at least we are still here making the story”.

  13. Allison L. says:

    Sounds like we’ve been through some similar things. I have had a series of illnesses since ’94. I am disabled & have been told that I was going to die numerous times. I’m still here & feel life is really good. I have started a Facebook page & am working on a related blog for people in wheelchairs. The main topic is where to go when you want to go out to eat, shop, entertain yourself & related issues. I hope to eventually turn it into a series of guide books. I’m a very positive person who’s always looking for solutions to difficulties. The Facebook page is “Gourmets on Wheels for the Disabled”.

  14. James T. says:

    Dear Dr. Gottlieb,

    Being a severely disabled American, blackballed from working for the federal government, I should just let it slide off my shoulders. But for some strange reason, it put hiring of the disabled in the federal government in a worse light even though we 3 wheelchair bound persons in Milwaukee, Wisconsin were going to change the system of the double probationary hiring periods and even the hiring numbers, able bodied vs. disabled, we found in the federal GOA we thought were going to be half way balanced between what it was 30 years ago and how that same GOA shows the dispairity getting worse.

    I’ve moved on, but what do you do when you’ve let your community down? We the 3 that first started this defunct trial of hiring the disabled, got boned and blackballed for the 25 year pilot program that doesn’t even exist on a Freedom of Information Act request. Yes, we are buried deep.

    My life is good, full, happy, wife, kids, grandkid, work, health, and the knowledge disabled Americans are getting the short end of the stick as far as hiring in the federal system is appauling. Look at the hiring numbers, not the Presidental Orders and feel good federal programs like Ticket to Work and Special Hiring Authority – don’t let them fool you. More able bodied Amerians work for Ticket to Work than they’ve got disabled into the federal system. Really helping disabled Americans work at decent wages and equal benefits.

    Not living off the public dole, doing something constructive for the country, is much more noble than you can imagine. To close, “But man is not made for defeat,” he said. “A man can be destroyed but not defeated. ”
    ― Ernest Hemingway, The Old Man and the Sea

    James A. T., Sr.

  15. Theodore R. says:

    As an orthopedic surgeon and a recent paraplegic, I thank you for this article.

  16. Debra R.L. says:

    I liked your outlook on your disability, I am doing exactly the same thing. I am no longer dwelling on the things that I cannot do. But, changing my thoughts is the best thing that I ever did for myself. LIFE is much more happier now that I am thinking better & positive thoughts, COUNSELING HELPED Of COURSE. It brought me out of the pain issues all the time. THAT used to be my life. NOW JOY IS MY LIFE. God bless us all & life is grand, live it to the fullest each & every day now!

  17. Jennifer M. says:

    Thank you. I never really thought of giving my body and mind compassion. Living with both bipolar disorder and fibromyalgia, I continuously fight both body and mind. It gets ever more frustrating. Compassion is not a path I thought to use before, let’s give it a try and see where it goes.

  18. Lois E. says:

    What a very special article that was!!! You continue to be an inspiration to me. This was the perfect time for me to hear your words, your thoughts and your loving heart. Thank you Dan, as always.

  19. Cindy A. says:

    I really liked your expression, opinion, interpretation and examples in this article!!!