Sometimes, It's Just Plain Heartbreaking

The absolute best part of starting this blog has been the relationships I've made with other wives to guys in wheelchairs. One of the closest relationships I've built is with Gentrie. Gentrie is married to Matt. He has been a quadriplegic for 20 years, and has recently been dealing with awful pain. Gentrie sent me this. It is heavy. It is raw. It is real.

So is her love and dedication to her husband. The pain is relentless. Her dedication meets it, every time.

These are the things we share. This is an intimate peek into our lives and the things we quad wives talk about.

And why we need each other. And why we need God.

It is not easy. Some days are bad. Really bad. Sure, there is joy. It's not always this tough for everyone. Every journey is different. Michael and I have it so easy compared to may others.

Our hearts break for them and with them. We fall asleep praying for them. But this raw, real, intimate stuff is the stuff of text messages, emails and Facebook messages that make us sisters.

Welcome to our world.

Click here to listen to Gentrie's heart.

I don't know what to do. My heart is breaking and grieving for all the people that suffer.

What do you as you watch a person suffer? Watch them writhe and sweat and cry out to God for mercy. What do you do as you sit comfortably in your own temporal dwelling of flesh and bone? Grimace and feel guilty. What do you do after you pray, you hold it together, champion, advocate and cheerlead your agonizing partner in this life? What do you do as you witness his tangible fear to keep living, intertwined with his ethereal fear of dying, fear of failure, fear of mediocrity? Its display is inescapable as you bear witness to it in the human you love and feel as much as your own being. 

Where do you go to cry and screech and wail and break and beg? Where do your dreams go? Your plans for 'us'? Your fantasies of holding hands? Sitting near each other on the same piece of furniture? Sleeping cold butt to cold butt in the same bed? Or even the same room. After the endless disappointing calls and pleads to doctor after doctor after doctor after doctor after doctor after doctor and doctor after doctor after doctor after administrator after therapist and parent, sister, father, best friend, lawyer, policy maker, receptionist, nurse, acupuncturist, colleague, stranger, neighbor and fellow caregiver? Where is the play book? The rule book? The script? The end? The reason? The answer?

Who tells you it gets better? It gets easier? It's temporary? That he will overcome? That there is a reason? A solution? A grand destiny? That there is help? 

Why is this beautiful soul shrouded in six failing feet two twisted inches, eighty seven startling pounds of physical flesh and deformed bone set on punishing him for an offense unknown? For an infinite time.

Why are there 185 doctor visits in 5 years? 1000s of pills? Unimaginable side effects? 10 failed surgeries and procedures? Unimaginable tears and desperation? Foul stench of burst colostomy bags in the middle of the night? Ruptured gushing cardiac picc lines on the brand new mattress? Blood pressure of 188/108 to a 30/50 dip? Why are there 20 years of crippling daily seizures of the bladder and teeterings of a stroke? Why are there ice pics of piercing pain from shoulder to finger tip? Why isn't there movement below the nips? This is inconvenient but mostly why people frown. Why are protective finger and toe nails fallen out? A result of shock? Why are there spasms that twist 37 years of life into a frozen fetal position every morning? Pressure sores, leg bags, catheters, snapped femurs...

cadaver bones, plates, screws, rods...

scoliosis, arthritis, osteoporosis, autonomic dysreflexia, malnourishment...

depression, tendonitis, neuropathy, colostomy...emergency surgery, endoscopy, sonogram,KUB...

hypogastric plexus anomaly...quadriplegia of the worst degree. 

Why do doctors and hospitals turn you away and look past you with down cast eyes and hurried glances? Why aren't my shoulders capable of handling this?

How is he still smiling? How is he still loving? How is he still going? How do I take the yoke and carry the burden and remain stoic?

When does he get his chance? When will it stop? When does he get to begin again? When will we stop asking why? When do we just accept it? When will my heart quit grieving and gripping me with paralyzing emotion? When will it be worse? 

 New normal? Silver lining? Am I culpable? Is this dying?

Is this preparation for our true lives? Is it true we are aliens here and only prisoners of our own devices? Waiting to discover what heaven is.

I cry softly at these tipping points. I cry violently when my body warrants it.

Questions don't matter in the midst of the splatter. He is fitfully asleep and I ponder our mutual disaster. 7,587 days and nights without privacy. Do you know what's stolen? Money, checks, medicine, prescriptions right from the pharmacy...

dignity, opportunity, normalcy...

child bearing and therefore child rearing, parking spots, girls that are hot...

always privacy, humanity, vehicles, clothes, wheelchairs, too...

all while in front of me.

Not being able to walk? That's inconvenient. It's everything else, that's disabling. Cobweb like nerves operated on.  What's left remaining  is paper thin muscle tissue and a spirit treaded upon. I'm gonna remind you one more time, that handicap spot? That's mine. The one you're taking. I will let you have it but it's a mistake you are making. Do it again, I'm not fakin', upon your return, it's me you're disgracing. 

Guest Post: Even Superman Wasn't Always Able to be Superman

This is a Guest Post from my friend, Gentrie.  Gentrie *really* helped me through the transition to having home health aides come into our lives. Now, she can drop some knowledge on you!

It's ok to know your limits. You are not and should not try to be superspouse or superkid to your disabled family member. Practically speaking, it's not doable. Your disabled loved one needs to be as independent as possible, which means not relying on you unnecessarily. Family members, you will be needed at inopportune times regardless... so save yourself for those middle of the night colostomy bag/flat wheelchair tire/cath/clothes changes, meal/travel/hospital stay/birthday party/Christmas dinner preps, and of course the endless picking up of the remote/cellphone/forks/brushes/keys/water bottles/toothpaste/meds/towels.

Your loved one doesn't need to be solely reliant on you. You are in denial if you think otherwise and you are cheating yourself out of a husband-wife or parent-child relationship. If that doesn't convince you, try reading Matthew 6. Sometimes people do things for the sake of others noticing and praising them or so others will pity them or envy them. Guess what? If you are human, you are guilty of all of those one time or another. The Bible says doing things with such motives and receiving those reactions from others is your only reward. And you risk being at least part,y responsible for stifling your mate, harming your marriage, and stealing your own joy. And you may not even be aware of this self sabotage. Before you go all self-righteous on me and if I haven't offended you yet; give me time. I probably will. To clarify, that is NOT my intent. My intent is to help you make your own situation better. I promise. You are gonna make plenty of your own mistakes; no sense in repeating mine.

I speak from both sides of this coin. I have tried to be superhuman, Miss 'do-it-all' because 1) no one can do it better, 2) if I don't, who will?, 3) I am physically capable, 4) geographically desirable, 5) schedule available, 5) it is my responsibility, 6) felt guilty for sleeping instead, working out instead, watch tv instead, getting myself ready instead, 7) it's too expensive, 8) he needs me and I can't let him down, 9) I'm just naturally a caregiver, 10)I want to...you get the point. Guess what? Those were all lies I told myself to continue a codependent relationship with this third wheel in my relationship called Disability. I found myself 1)exhausted, 2)resentful, 3) sleep deprived, 4)damaging my marriage, career, body, other relationships, 5) and moving from role as mate to nurse/attendant/cook/maid/employee.

Once I accepted my limits and set boundaries, which I most often crossed, and LET GO...we found help, found the money (even when I was laid off), found our mutual independence, found our romantic spark, found our free time...again, you get the point.

To give you a little history, Matt broke his neck in '92 and we became a 'we' a little over 4 years ago. Matt relied on his mother mostly, a mentally challenged uncle, 2 sisters, several good friends, a few bad friends, and a handful of attendants along the way.

After about 3 months of doing it all on my own, I told my boss I needed to office from home 3 mornings a week to which he reluctantly agreed (I can help you present this option to an employer) and eventually quit 10 months later. I took a position working from home, we hired an attendant, and things were so much better! Until they weren't. The attendant developed an attitude and quit doing things he was paid to do and I got laid off. Through prayer and faith; things turned around and I got another job making...30% less and added a second job (work from home) 3 months later. With the money back on track, we interviewed and hired an attendant...who no showed, one who quit 2 weeks in, and another who disappeared leaving Matt stranded in bed...and weeded out a few more.

Finally, we hired a good one who is still with us. Praise God. This time around, Matt and I analyzed what went wrong with the others and realized: 1) there can only be one boss, Matt, not me. Otherwise, it's confusing for attendant when he receives conflicting duties, priorities, or too much to do in a given time. 2) we needed to manage the attendant's expectations PRIOR to the interview and maintain what exactly those would be., 3) encourage him and Matt to discuss little nuisances and nuances as they come up instead of letting them build-that was awkward for them both at first but now 13 months in and a couple 'issues' later...all is good and mutually beneficial:)

Here's how we find 'em:

We post an ad on the web, screen out anyone without experience, anyone with a questionable resume, email address, or outgoing voicemail, etc. I email the remaining applicants for further info (elaborate on experience, pay range, hours available, and so forth. If I get a bad vibe or their answers are not what I am looking for, they are out.) Once I weed through and find the 'good ones', I print them out for Matt and he pulls the ones he likes. He will call them. If they sound unprofessional or shady on their voicemail or during the phone interview, they are out. Matt doesn't tell them they are being interviewed on the phone. The ones that make it through, Matt confirms that they live within 15 minutes (any further than that, after a while the drive/gas deters them from wanting to work for just a few hours per day) and that they have transportation. Matt meets them, without me (I tend to try to takeover) at a nearby fast food place. He brings with him a copy of the ad, a list of attendant duties and their frequency, a list of medical duties/frequency, and a list of personal attendant duties/frequency. He asks for a copy of their DL, references (which we actually call), writes down their license plate number, and a copy of their SS card. We pay 20 bucks and do a background check. These steps are each crucial. This job is intimate, important, and can be the greatest thing for all involved if the expectations are set up right from the start. Remember, it never gets better than the interview. If something doesn't add up, don't let them in your home, in your life...it never works out.

Here is a sample ad we use. It's ok to be blunt. Don't beat around the bush regarding what you need and expect. We do private pay and don't go through agencies as they are too expensive.

MALES ONLY APPLY--NO EXCEPTIONS Please

Experienced Attendant/Assistant Care for C-5 quadriplegic male- I'm able to drive and quite independent.

Duties:

Transferring to shower, from bed to wheelchair, dressing, meal prep, range of motion exercises, continence care. Chores around the house-laundry, sweeping, making bed, general cleaning, light yard work, errands as needed. Essentially, I need you to be MY hands and let me give the direction. ex: If I ask you to help me cook; I want to be involved so let me lead and you follow. On the other hand, if I ask you to cook FOR, do it however you want as long as it comes out the way I want.

Send resume via email.

I want to manage the expectations hence this blunt ad though I am very laid back.

Experience required.

Be able to lift 110 lbs.

Days and hours are flexible. Part time position. You must live within 15 minutes of SW Arlington-NO EXCEPTIONS please

Due to the nature of this job, you also need to be flexible but RELIABLE.

REFERENCES will be checked.

If you do not meet the above criteria PLEASE do not apply as this is always a waste of time for each party;)

3-6 days per week. 2-4 hours per day. Depending on your needs and mine. I prefer mornings, however.

Thank you in advance!

Guest Post: A Daughter's Perspective

This is a guest post from Brittany Martin. Brittany is a co-founder of SPINALpedia.

My only concern when my dad was first injured was whether or not he would live. I was told pretty early that he had broken his neck, but I had no idea what that really meant. In my 12 year old mind, my interpretation was that one day I would help my dad walk again, but once I learned what paralysis really meant that image was shattered.

Having lost my only brother in the accident, I was left to figure a lot of it out on my own. I remember cleaning the screws from the halo bolted into my dad’s skull.  I learned how to use a hoyer lift to help him get into bed. I even took shifts waking up at 2am to help turn him at night to avoid pressure sores. Transfers, cervical vertebrae, catheters and spasms became a part of my normal vocabulary.

My dad and step-mom were transitioning too—learning the ins and outs of life with paralysis. My step-mom connected with other spouses of quadriplegics, and my dad toiled daily in all kinds of therapy. One day he was struggling with a Velcro sleeve to hold an eating utensil, when another quadriplegic rolled up and said simply, “try this.” My dad watched him weave the fork through his immobile fingers, and it is how my dad has eaten ever since.  

I watched these things happen and saw how the power of connection and mentoring made such a difference in our lives and how much it expedited the adaptation process. However, I began to wonder, what would have happened if we lived far away from a big city? What if there were no mentoring programs or no one with similar mobility for my dad? I quickly came to realize how many people weren’t as lucky as we were, and I couldn’t accept that. Something needed to bring the entire community together—that something is now SPINALpedia!

SPINALpedia is a growing online community of people affected by paralysis—those paralyzed as well as the able-bodied supporters--- who share their experiences to help others learn to adapt their lives more quickly and realize their potential. Searches are efficient—members specify details of their mobility and situation to filter relevant videos and members. Whether you’re a paraplegic aiming to transfer in and out of your car or a ventilator dependent quadriplegic hoping to use a computer again, you can filter content and find exactly what you are looking for. No more sorting through millions of YouTube videos and no more reading pages of text-based information which may or may not be useful. You can even search by your relation to paralysis, helping spouses find other spouses, parents find other parents, and friends find other friends. We have created a living, breathing, dynamic manual of life affected by paralysis, completely customizable to your needs.

Our mission is to give people the tools they need to redefine their lives and to free up precious time. As we help more people cut the number of years it takes to learn certain tasks and reduce the number of people unaware of their potential, we will slowly change the negative, condescending perceptions of paralysis, as more and more people are out, active and happy in society. 

We don’t have a say in the challenges we face in our lives, but we do have a say in how we move forward. Join SPINALpedia, learn from others, share your own triumphs and together we will redefine life in a wheelchair. 

Facing Disability: A New Way to Connect After a Spinal Cord Injury

This is a guest post written by Annie Hambleton of Facing Disability.  This is our first guest post, and we are so happy to partner with Facing Disability!  It's a great resource for SCI families, and anyone who just has questions about how a spinal cord injury affects a person, and how they and their families manage moving on.  

When a spinal cord injury occurs, it impacts the entire family. It seems like no understands their new situation in a way to help them deal with their lives ahead. That’s why the Hill Foundation of Chicago created the new website, FacingDisability.com, to connect families facing spinal cord injuries with others who have been there before them.

FacingDisability.com has more than 1,000 videos drawn from interviews of over 100 people with spinal cord injuries, and their mothers, fathers, siblings, children and caregivers. Every person was asked the same 48 questions, such as “What was your greatest fear at first?” and “What do you wish you had known at the beginning?” It is the only place on the Internet where you can see and hear the voices of experience.

Michelle, who became quadriplegic at 21 said, “I wish I would have automatically had known that I was always going to be myself. I don't know what I thought the wheels were dramatically going to do to me, but I wish that I would have known that the things I enjoyed before, and the way I was before, was all going to be the same. I would just have to go about things in a different way.”

Jennifer, who was a teenager when her mother became quadriplegic at 42, said, “I wish I had known that this was actually going to be a better thing for her, that this really was a window opening and not a door closing for her. Even though there are periods of time when it's really hard, her life is so much better, all of our lives are so much better. The time we spend together is more special now, and we make more of a point to do things together…she's so active in so many of the things that she does, and I wish that I had known that her life was going to be better as a result of all of it.”

If you’d like to hear from someone like you, FacingDisability videos are arranged by relation to injury as well as by question. You can watch individuals with SCI, parents, spouses, sibling and children, and refine your search by level of injury (paraplegic or quadriplegic), gender of person injured and age at injury. Follow this link to see all of the FacingDisability questions and answers on living with paralysis.
There is also an “Expert” video section made up of over 200 videos from interviews with top spinal cord injury experts. Here you can find professional answers on topics most people want to know about right away, such as “Spinal Cord Injury 101,” “Transition from Hospital to Home” and “Sex and Fertility after a SCI.”

Connecting with someone who has “been there” is one of the best ways to deal with a new injury. FacingDisability has a “Peer Counseling” service, made for people who want to connect one-to-one through an anonymous email system. There is also a “Forum” section where you can ask questions, or share answers.

Finally, FacingDisability.com has over 300 of the best resource on the Internet in the “Resources” section.

FacingDisability.com was established by the Hill Foundation of Chicago. Their mission is to provide Internet-based information and support for people with spinal cord injuries and the members of their families. Connecting with the life experiences of others who have been there before often helps people find the strength and support to face their new lives ahead. For more information, contact FacingDisability at info@FacingDisability.com.