I am the Voice of Chronic Pain - Part Three: How to Help

Just as there are different levels of severity to a disability or condition, there is also a hierarchy of help that can be available to each individual with a chronic condition.

Last year was one of the worst years of my life – of our life. My promise for recovery was broken, so was my spirit. Prior to my surgery, I was physically limited for about eleven months as my back was injured and never healed. I was allowed to be a Newlywed for only three weeks, then the early Joys of Marriage were stolen from me, too. Gage and I were not even living together for a month before my surgery changed both of our lives. We did not know what to expect of my rehabilitation, for everything that doctors foretold of my recovery was wrong (aka, never happened). I was not getting better; however, because I was told that I would be healed and return to work eight weeks after surgery, my employer, my family, my friends – everyone – expected me to recuperate and show improvements. Due to the fact my condition actually regressed, Gage and I were not prepared. We did not know how to ask for help. We did not know who would help us – or how. We did not know what we could ask for from others. We did not even realize what we needed at the greatest time of need in our marriage because we were so consumed with just getting by…

The summer that I injured my back (July 2009), I also was forced to quit my position as a Homebound Instructor for a boy, Bryan O’Hare* who had a chronic illness that prevented him from attending school. I had worked with this boy and his family for years before I developed my own disability and during my time there I constantly noted the intense support that this family received from their family, friends, church, neighborhood, community, hospital staff, strangers and more.

As I stepped into my own disabled life, I was aware of the types of help and support that were offered to the O’Hare family; but, I was unaware of their availability to Gage and me. I had seen the customary Acts of Courtesy & Kindness given to families in need, to grieving persons, to cancer patients, to others immediately after undergoing surgery – you name it! However, I had no idea what would help me – or others with chronic illness. To me, my pain was my life; my restrictions were my new reality; my marriage was structured around my condition and Gage and I thought that that was “normal.”

Countless people have approached me and asked, “What can I do for my friend who has a disability or who is in pain?” The following is a list of Acts of Kindness that I have seen bestowed upon the O’Hare and other families, including my own, that have made a world of difference:

- Laundry Fairy – The O’Hare Family would weekly set baskets of dirty laundry on their front porch and people from their church and community had a rotating system set up so that someone would come, pick up the laundry and return it clean and folded a few days later.

- Dinner Fairy – The O’Hares were also blessed with regular meal drop-offs. My brother-in-law also was blessed with Dinner Fairies when his wife passed away last year. His community set up a Dinner Schedule and we supplied our cooler; his Dinner Fairy would stop by and place the family dinner in the cooler so that when my brother came home from work, dinner was waiting for him and the kids.

- Car-Pooling: For anyone who is restricted in driving (or cannot drive at all), it is such a blessing to have someone else offer to drive them to an event! This is also a huge help for families with multiple children who have a loved one with a condition – it eases the burden of “who will pick up the children from school while I stay home with my sick child?” Additionally, it is helpful when friends offer to meet half-way or to come to our house instead of having us pack up all of my medical devices so that I can be somewhat comfortable in your home.

- House-Cleaning: Before I got married, my mother came to my home once each month and cleaned my house for me. Her help was paramount – my disability restricted me entirely from such simple Activities of Daily Living and her physical act of kindness allowed me to have a home where I felt comfortable and organized.

- Grocery Shopping: Since I am still unable to push a cart full of food, friends have offered to go grocery shopping for me OR to take me, pushing the cart, reaching items on the lower shelf and loading/un-loading the car.

- Running Errands: If you live close to your loved one and are headed to a store, call and ask if there is something that you can pick up for them while you are out – my next-door neighbor, Danielle, did that when she knew I was sick or in severe pain last year and whether I needed something or not, that phone call meant the world!

- Sponsorship: Many people with health problems also have financial problems. Healthcare – even with insurance – costs money! Gage and I have received donations (and offers) from loved ones to help pay for: Physical Therapy, orthopedic shoes, Nutritional Counseling, Acupuncture, Massage Therapy, Prescriptions, etc. Additionally, we have worked with our regular doctor offices and applied for Scholarships. I have received scholarships (that reduced the costs of my co-pays and deductibles) at my PT Facility and with my Pain Counselor; additionally, Gage and I have exchanged work (aka “bartered”) with my Acupuncturist for reduced costs on visits. Last year, we would not have been able to make it without the financial support and scholarships from both our family and those organizations!

- Emotional Support: To me, the most valuable offering I have received from my loved ones has been emotional support. I need those around me to ask, “How are you?” I need people to believe me when I say that I am in pain. It is such a blessing when friends offer me pillows or offer their comfortable chair to me when I walk into a house, acknowledging that I have physical needs and showing me their interest in my comfort and health. What helps us most is having flexible, understanding relationships with others. Unfortunately, we can never 100% commit to an invitation. Ultimately, my disability determines whether or not I (or we) leave the house. I sympathize with the disappointment felt when we have to cancel or decline, but guilt-trips are unnecessary and understanding of our circumstances is what will ultimately keep our relationships strong. My best friend, Melissa, even researched "How to help a person with a disability" and blessed me with many wonderful acts of kindness and encouragement. The fact that she took the time to do such research filled my heart more than words can say!

The above are what I consider Extreme Measures of Provision. One thing to note is that the Laundry Fairy and the Dinner Fairy are quick and often unseen. I know that when I am in extreme pain – enough to keep me from even making myself a bowl of cereal – the last thing that I can handle is small talk at my front door. Most days like that, I cannot even stand to open that door in the first place. If you chose to be someone’s Dinner Fairy, consider setting it up so that it is a simple exchange of the gift. Set aside another time with that family where you can sit down and visit – that is a different type of support all together! For example, after my surgery, my mom set up weekly dates where Gage would stop by her house on his way home from work and she would send him with a meal or two. Also, my dear friend and co-worker, Dina, went to a Catering Company and brought us several frozen meals that greatly helped us on evenings when I tried to work a day and came home unable to move and when Gage had the weight of the world on his shoulders. I admit, it is still very difficult for Gage and I to ask for help – but these particular acts of kindness really made a difference in our life last year!

For Friends and Family of Gage and I, I am trying to push my (and my husband’s) pride aside to express what would help us most during our current stage of Disability:

- PLANNING: If you wish to see us, please send us or extend an invitation with as much notice as possible. Many people assume that since I am not working that I have an open schedule. This is not true! I regularly attend 4 appointments each week, I also complete 2-3 additional independent PT sessions that same week and I typically have a Specialist appointment added to that schedule, averaging up to 8 physical appointments or treatments EACH week – not counting social events already on our calendar and the start of my Vocational Rehabilitation! I am also REQUIRED to rest. And, I am still physically unable to withstand back-to-back social functions. In order for Gage and I to say “yes” to an invite, we need at least a week’s notice so that we can coordinate my appointments with my rest and then find a way to add the fun Social Event to the calendar. As chaotic as it sounds, we are getting very good at coordinating all of these events, but without notice, we usually are forced to say “no” because our lifestyle does not allow for the type of flexibility in which people without a chronic condition are blessed.

- ACCOMMODATIONS: As I mentioned before, I am always touched when my condition is taken into account by others. I often bring my orthopedic cushion with me wherever I go, but the offer of comfort, pillows, a stable/supportive seat, etc. truly helps me feel both physically and emotionally at ease.

- HELP WITH HOSTING: Gage and I often find ourselves in a catch-22 situation. My house is the most comfortable place for me to be; it holds my specialized pillows, my heating pads, my medication, my body wraps, my back brace – all of my essentials. HOWEVER, being the Hostess with the Mostess is difficult when I am in pain and trying to maintain a comfortable position so that I can enjoy my company for as long as possible. Gage and I have found that Easy-Hosting works best for us; ordering food instead of cooking it ourselves, making part of a meal and having our guests offer to bring the other part of it, telling our company that “our home is your home” so that they are comfortable getting their own drinks, silverware, etc., playing Musical Chairs – I often cannot maintain one position for more than 45 minutes, moving from the dining room table to the couch, switching from one place on the sectional to another – you name it, I am a squirmer and if you come into our home, please be aware that I may be all over the place or I may be tucked into a corner and not move all night long!

- WE NEED ENCOURAGEMENT: In all honesty, my disability scares me. I have questioned my faith, I have gone through bouts of depression, I am working through the steps of the grieving process as I face the reality of my condition… AND SO IS GAGE. This was not the life I signed up for and it is not the marriage that Gage thought he was entering. My heart gets light every time someone emails or leaves a comment after they read my blog; happy tears fill my eyes every time I get an Encouragement Card or Care Package in the mail; my loneliness dissipates every time someone close to me calls me after a “big” doctor appointment to see how it went. If you are praying for me, please tell me this! If I come across your mind, please text me! I cannot even put into words how much the support of family and friends lift my spirits and remind me that I AM NOT ALONE… I AM LOVED…

- REMEMBER MY HUSBAND: I say this again and again – My husband and I are one. Gage is disabled as I am disabled. He hurts when I hurt. His heart breaks every time we go to the doctor and receive “bad” news just as deeply as my heart breaks. OUR WORLD is on his shoulders when I am put on bed rest and it becomes his job to take over EVERY aspect of running our household. Gage needs to be loved. He needs his friends and family to call him and ask him how HE is doing. He needs to know that people know what he (we) endure through our life of disability. He feels as if his burdens are lifted when his friends ask him how I am doing; ask GAGE how Gage is doing, too! He feels protected when friends tell him that they are praying for me. PLEASE pray for Gage, too! Above all, recognize that Gage believes in his role as my husband; he does not mean to put others “second” – he wishes to be respected for the sacrifices that he makes when he chooses to care for his wife, not handed a guilt-trip or expected to give explanations for why he has to say no or makes the decision to aid his disabled wife rather than go out with his friends. (Please note, I am speaking for Gage right now based on what I have seen him go through and heard him say over these past three years, if you would like to discuss this with him more, call him…)

Currently, Gage and I are not in the same, terrorized-stage of life we were prior to my current diagnosis of Failed Back Syndrome and to me qualifying for Disability. I can now help Gage with a majority of the household chores and I can attend many social functions with him! Yes, we still have our struggles, but this blog is not a passive attempt at getting someone to clean our house or bring us food (not many know how to cook oil-free, vegetarian meals anyways – LOL!). Gage and I are learning to take care of those things on our own through trial and error and a lot of forgiveness for each other and laughter on both of our parts. If you take anything away from this blog, I encourage you think of ways that you can help your loved one who has a chronic condition and then DO IT! I am never offended when someone asks me what I need – do not be afraid to ask your loved one what he/she needs from you. Also, just as I explained that last year, Gage and I did not know what we needed or how to ask for it, I recommend that if you see a need, act on it without waiting to be asked! Lastly, if you have additional ideas of ways that you have helped others in the past, share them in a Comment on this blog!

I pray that this blog helps you better understand the life and needs of a family with a chronic condition or disability. It may not be your duty to help anyone, but if it is put on your heart, I hope that these suggestions lead you to a place where you can be someone’s Fairy or Blessing.