For the Scoliosis friends and family

This week, I have seen a friend struggle with illness in her family – but, mostly struggling with all the “well meaning” in their lives that don’t really turn out to be that helpful to a family dealing with illness.  And, it occurred to me that, in all my years of this blog, I do not think I have written an article specifically addressed to the friends and families of people dealing with the illness of Scoliosis.  Because Scoliosis is so complex, there are many different paths that families can take in their journey.  I know from experience that the research and advice from “experts” can become overwhelming and I always advise parents and patients to research all the options themselves and then come up with a plan to present to their medical team.  It’s very difficult to formulate this plan, however, when you have hoards of well meaning friends and family giving you their unsolicited opinion.  A wise person once said to me: “What is the difference between advice and control?  Advice is solicited.”  It is very true that anyone who gives unsolicited advice is really out to control your decisions through influencing you with their own. And, it can make a person dealing with illness feel very torn and in a “no win” situation.  The focus of any treatment plan should be solely in the best interest of the patient – but, it can be hard to put that priority first when you have many different unsolicited opinions flying your way. I mean this all with respect – I KNOW that people gave me “advice” and suggestions from a place of love and truly wanting to help, but the reality is that, if it is unsolicited, it doesn’t really help.

Rule #1: Don’t provide advice unless it is asked for.  A correct response is usually, “I am so sorry to hear that you are dealing with that.  Please let me know what I can do to help.”  If you want them to know you have knowledge on the subject, you could also add:  “Also, I have been doing reading and research on this particular illness and I am happy to share with you my findings, if you would like.  But, there is no pressure.  I am here to help and won’t be offended if you do not want me to share my findings.”  Even I, who some parents consider a “lay expert” of sorts, ask parents – “Do you want to know what I would do?”.  Sometimes a family just needs to vent.  They may JUST WANT YOU TO LISTEN.  So, listen, ask them “Do you need to vent here or is there something more I can do to help you?”.  And, ACCEPT THEIR ANSWER.  They will know they can come to you if they need you.  Sometimes Scoliosis parents say to me, “I know you won’t agree with this, but…”, to which I always listen, tell them that I respect their decisions and I MEAN IT.  People don’t have to agree with me for me to support them.  And, I never dish out the “I told you so’s” later, if there are any.  What good does that do?  There are many ways to walk the path of an illness and, barring any very dangerous or negligent behavior, other people’s decisions are really none of my business.  Additionally, be sensitive to passive aggressive social media posts – general “fyi” sharings that are not technically targeted at the person dealing with illness, but that could provoke fear, anger, or just a general feeling of discomfort in them. Remember the goal: providing support to your loved one.  Sometimes to do this properly, you have to support them while they do something you don’t necessarily agree with and just keep you opinions literally to yourself.

Rule #2:  After telling a family that you are there to help in whatever way they need, come up with a way to help them anyway.  Many people will downplay their need for help (I know I did).  Simple suggestions: mail them a card with $10 or so for a meal.  Especially for families spending a lot of time in medical facilities, every meal helps.  Or, send a gas card for a gas station you know they frequent – I know we spent many, many hours on the road to go get treatment. Every little bit helps.  Offer to help drive other children to events, or invite them over for some fun activities.  The siblings of patients can feel everything gets very “doom and gloom” at home.  Parents are taxed trying to figure out how to “take care of business”, while balancing fun in the household.  So, any little gesture helps.  And, the list goes on – there are just so many ways to support a family dealing with illness, while keeping the time demands on the family to a minimum.  Don’t wait for them to take you up on your offer of help – just do something for them anyway.

Rule #3:  Do not ignore Rule #1. 🙂

The Little Engine on a Curvy Track

It has been a while since I have written.  I know how everyone just LOVES excuses, but I actually have a good one (at least I think so).  Since I last wrote, we have bought a new building for the business, spent weeks fixing it up to move in, continued to fix it up and get settled, fixed the upstairs apartment in the same building to get ready for tenants, managed many construction projects, and kept tackling the influx of orders, while still living life – including being in rehearsal for a show, in which I have a lead role, and my kids are both in, AND continuing to manage my other two houses (one we are trying to sell… long story).  Yikes.  I am so glad to be looking BACK on the last month and not FORWARD towards it.   While we are not done (still waiting on window installation and the roof is being worked on as I write), I can say, at least, that we are on the final stretch.  The tenants are settling in, we are getting to the point where we are pretty settled in our downstairs work facility, and I am just one week from my annual vacation to my family reunion.  So, things are looking up.

Looking back, though, I have had the moments of panic, like – “will I possibly get it all done??”  And, I just kept planning and doing, working, plodding away…being the proverbial “Little Engine That Could”…and, at some point, I just stopped worrying about the IF and focused on the HOW.  I stopped panicking at a certain point as to IF I would get it all done and realized that I WOULD get it all done, and just tried to figure out HOW.  Some other things have had to be sacrificed in the process – believe me, my main living house has seen cleaner days!  (And, yes, my blog has been neglected)  But, everyone pitches in – my husband is holding down the home fort quite well, while also pitching in on some projects here, my kids have been working both at home and at the new business house to clean and fix up what needs to be done – everyone is contributing.  But, MOM/BOSS/LANDLORD me is the ultimate one accountable – the one that needs to keep all the gears in motion.  And, I have just KEPT CHUGGING.

I had a Mom tell me in an email this week how devastating her daughter’s Scoliosis diagnosis was – especially since it followed an equally devastating diagnosis of a rare condition that her son has to deal with.  She, like many of us, was completely overwhelmed (and probably still is).  But, she keeps going – she keeps chugging away at this curvy train track of life and plodding up those difficult hills, one at a time.  We have all been there – those of us who deal with the treacherous train track of Scoliosis diagnoses, x-rays, treatments, bracing…the list goes on.  We sometimes wonder IF we will be able to keep the train running – and, then, somehow, we just MAKE IT WORK.  So, parents/patients, take a deep breath.  You can do this.  Life is no easy ride, and, for some of us, it’s even tougher – but you CAN do it and you WILL do it.  So, go forth in faith – in yourself, in God, and in the process…and, JUST KEEP CHUGGING.